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3. ERN ReCONNET points to consider for treating patients living with autoimmune rheumatic diseases with antiviral therapies and anti-SARS-CoV-2 antibody products

Author

Talarico, R, Ramirez, G, Barreira, S, Cardamone, C, Triggianese, P, Aguilera, S, Andersen, J, Avcin, T, Benistan, K, Bertsias, G, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Callens, S, Carreira, P, Cervera, R, Cutolo, M, Damian, L, Della-Torre, E, Faria, R, Fonseca, J, Galetti, I, Hachulla, E, Iaccarino, L, Jacobsen, S, Khmelinskii, N, Limper, M, Marinello, D, Meyer, A, Moroncini, G, Nagy, G, Olesinska, M, Pamfil, C, Pileckyte, M, Pistello, M, Rednic, S, Richez, C, Romao, V, Schneider, M, Sciascia, S, Scire, C, Simonini, G, Smith, V, Sulli, A, Tani, C, Tas, S, Tincani, A, Vonk, M, Tektonidou, M, Mosca, M, Talarico R., Ramirez G. A., Barreira S. C., Cardamone C., Triggianese P., Aguilera S., Andersen J., Avcin T., Benistan K., Bertsias G., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Callens S., Carreira P. E., Cervera R., Cutolo M., Damian L., Della-Torre E., Faria R., Fonseca J. E., Galetti I., Hachulla E., Iaccarino L., Jacobsen S., Khmelinskii N., Limper M., Marinello D., Meyer A., Moroncini G., Nagy G., Olesinska M., Pamfil C., Pileckyte M., Pistello M., Rednic S., Richez C., Romao V. C., Schneider M., Sciascia S., Scire C. A., Simonini G., Smith V., Sulli A., Tani C., Tas S. W., Tincani A., Vonk M. C., Tektonidou M., Mosca M., Talarico, R, Ramirez, G, Barreira, S, Cardamone, C, Triggianese, P, Aguilera, S, Andersen, J, Avcin, T, Benistan, K, Bertsias, G, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Callens, S, Carreira, P, Cervera, R, Cutolo, M, Damian, L, Della-Torre, E, Faria, R, Fonseca, J, Galetti, I, Hachulla, E, Iaccarino, L, Jacobsen, S, Khmelinskii, N, Limper, M, Marinello, D, Meyer, A, Moroncini, G, Nagy, G, Olesinska, M, Pamfil, C, Pileckyte, M, Pistello, M, Rednic, S, Richez, C, Romao, V, Schneider, M, Sciascia, S, Scire, C, Simonini, G, Smith, V, Sulli, A, Tani, C, Tas, S, Tincani, A, Vonk, M, Tektonidou, M, Mosca, M, Talarico R., Ramirez G. A., Barreira S. C., Cardamone C., Triggianese P., Aguilera S., Andersen J., Avcin T., Benistan K., Bertsias G., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Callens S., Carreira P. E., Cervera R., Cutolo M., Damian L., Della-Torre E., Faria R., Fonseca J. E., Galetti I., Hachulla E., Iaccarino L., Jacobsen S., Khmelinskii N., Limper M., Marinello D., Meyer A., Moroncini G., Nagy G., Olesinska M., Pamfil C., Pileckyte M., Pistello M., Rednic S., Richez C., Romao V. C., Schneider M., Sciascia S., Scire C. A., Simonini G., Smith V., Sulli A., Tani C., Tas S. W., Tincani A., Vonk M. C., Tektonidou M., and Mosca M.

Abstract

Recent studies have shown that people who are immunocompromised may inadvertently play a role in spurring the mutations of the virus that create new variants. This is because some immunocompromised individuals remain at risk of getting COVID-19 despite vaccination, experience more severe disease, are susceptible to being chronically infected and remain contagious for longer if they become infected and considering that immunocompromised individuals represent approximately 2% of the overall population, this aspect should be carefully considered. So far, some autoimmune rheumatic disease (ARD) patients with COVID-19 have been treated with antiviral therapies or anti-SARS-CoV-2 antibody products. However, there is no homogeneous approach to these treatment strategies. This issue was addressed within the European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) in a discussion among experts and patient's representatives in the context of the rare and complex connective tissue diseases (rCTDs) covered by the Network. ERN ReCONNET is one of the 24 ERNs launched by the European Commission in 2017 with the aim of tackling low prevalence and rare diseases that require highly specialised treatment and promoting concentration of knowledge and resources through virtual networks involving healthcare providers (HCPs) across the European Union (EU). Considering the urgent need to provide guidance not only to the rCTDs community, but also to the whole ARDs community, a multidisciplinary Task Force, including expert clinicians and European Patient Advocacy Group (ePAG) Advocates, was created in the framework of ERN ReCONNET with the aim of developing overarching principles (OP) and points-to-consider (PtC) on a homogenous approach to treat immunocompromised patients with ARDs (with a particular focus on CTDs) affected by COVID-19 using antiviral therapies and anti-SARS-CoV-2 antibody products. The present work reports the final OP

Published
2023

4. The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET

Author

Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Andersen, J, Arnaud, L, Avcin, T, Marsal Barril, S, Beretta, L, Bombardieri, S, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Corti, P, Costedoat-Chalumeau, N, Davidsone, Z, Doria, A, Fenech, C, Ferraris, A, Fischer-Betz, R, Fonseca, J, Frank, C, Gaglioti, A, Galetti, I, Guimaraes, V, Hachulla, E, Holmner, M, Houssiau, F, Iaccarino, L, Jacobsen, S, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Milas-Ahic, J, Moinzadeh, P, Montecucco, C, Mouthon, L, Muller-Ladner, U, Nagy, G, Patarata, E, Pileckyte, M, Pruunsild, C, Rednic, S, Romao, V, Schneider, M, Scire, C, Smith, V, Sulli, A, Tamirou, F, Tani, C, Taruscio, D, Taulaigo, A, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P, van Laar, J, Vieira, A, de Vries-Bouwstra, J, Zschocke, J, Cutolo, M, Mosca, M, Talarico R., Aguilera S., Alexander T., Amoura Z., Andersen J., Arnaud L., Avcin T., Marsal Barril S., Beretta L., Bombardieri S., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Cannizzo S., Cavagna L., Chaigne B., Cornet A., Corti P., Costedoat-Chalumeau N., Davidsone Z., Doria A., Fenech C., Ferraris A., Fischer-Betz R., Fonseca J. E., Frank C., Gaglioti A., Galetti I., Guimaraes V., Hachulla E., Holmner M., Houssiau F., Iaccarino L., Jacobsen S., Limper M., Malfait F., Mariette X., Marinello D., Martin T., Matthews L., Matucci-Cerinic M., Meyer A., Milas-Ahic J., Moinzadeh P., Montecucco C., Mouthon L., Muller-Ladner U., Nagy G., Patarata E., Pileckyte M., Pruunsild C., Rednic S., Romao V. C., Schneider M., Scire C. A., Smith V., Sulli A., Tamirou F., Tani C., Taruscio D., Taulaigo A. V., Tincani A., Ticciati S., Turchetti G., van Hagen P. M., van Laar J. M., Vieira A., de Vries-Bouwstra J. K., Zschocke J., Cutolo M., Mosca M., Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Andersen, J, Arnaud, L, Avcin, T, Marsal Barril, S, Beretta, L, Bombardieri, S, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Corti, P, Costedoat-Chalumeau, N, Davidsone, Z, Doria, A, Fenech, C, Ferraris, A, Fischer-Betz, R, Fonseca, J, Frank, C, Gaglioti, A, Galetti, I, Guimaraes, V, Hachulla, E, Holmner, M, Houssiau, F, Iaccarino, L, Jacobsen, S, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Milas-Ahic, J, Moinzadeh, P, Montecucco, C, Mouthon, L, Muller-Ladner, U, Nagy, G, Patarata, E, Pileckyte, M, Pruunsild, C, Rednic, S, Romao, V, Schneider, M, Scire, C, Smith, V, Sulli, A, Tamirou, F, Tani, C, Taruscio, D, Taulaigo, A, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P, van Laar, J, Vieira, A, de Vries-Bouwstra, J, Zschocke, J, Cutolo, M, Mosca, M, Talarico R., Aguilera S., Alexander T., Amoura Z., Andersen J., Arnaud L., Avcin T., Marsal Barril S., Beretta L., Bombardieri S., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Cannizzo S., Cavagna L., Chaigne B., Cornet A., Corti P., Costedoat-Chalumeau N., Davidsone Z., Doria A., Fenech C., Ferraris A., Fischer-Betz R., Fonseca J. E., Frank C., Gaglioti A., Galetti I., Guimaraes V., Hachulla E., Holmner M., Houssiau F., Iaccarino L., Jacobsen S., Limper M., Malfait F., Mariette X., Marinello D., Martin T., Matthews L., Matucci-Cerinic M., Meyer A., Milas-Ahic J., Moinzadeh P., Montecucco C., Mouthon L., Muller-Ladner U., Nagy G., Patarata E., Pileckyte M., Pruunsild C., Rednic S., Romao V. C., Schneider M., Scire C. A., Smith V., Sulli A., Tamirou F., Tani C., Taruscio D., Taulaigo A. V., Tincani A., Ticciati S., Turchetti G., van Hagen P. M., van Laar J. M., Vieira A., de Vries-Bouwstra J. K., Zschocke J., Cutolo M., and Mosca M.

Abstract

In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients. It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.

Published
2022

6. ERN ReCONNET points to consider for treating patients living with autoimmune rheumatic diseases with antiviral therapies and anti-SARS-CoV-2 antibody products.

Author

Talarico, R., Ramirez, G.A., Barreira, S.C., Cardamone, C., Triggianese, P., Aguilera, S., Andersen, J., Avcin, T., Benistan, K., Bertsias, G., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G.R., Callens, S., Carreira, P.E., Cervera, R., Cutolo, M., Damian, L., Della-Torre, E., Faria, R., Fonseca, J.E., Galetti, I., Hachulla, E., Iaccarino, L., Jacobsen, S., Khmelinskii, N., Limper, M., Marinello, D., Meyer, A, Moroncini, G., Nagy, G., Olesinska, M., Pamfil, C., Pileckyte, M., Pistello, M., Rednic, S., Richez, C., Romão, V.C., Schneider, M., Sciascia, S., Scirè, C.A., Simonini, G., Smith, V., Sulli, A., Tani, C., Tas, S.W., Tincani, A., Vonk, M.C., Tektonidou, M., Mosca, M., Talarico, R., Ramirez, G.A., Barreira, S.C., Cardamone, C., Triggianese, P., Aguilera, S., Andersen, J., Avcin, T., Benistan, K., Bertsias, G., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G.R., Callens, S., Carreira, P.E., Cervera, R., Cutolo, M., Damian, L., Della-Torre, E., Faria, R., Fonseca, J.E., Galetti, I., Hachulla, E., Iaccarino, L., Jacobsen, S., Khmelinskii, N., Limper, M., Marinello, D., Meyer, A, Moroncini, G., Nagy, G., Olesinska, M., Pamfil, C., Pileckyte, M., Pistello, M., Rednic, S., Richez, C., Romão, V.C., Schneider, M., Sciascia, S., Scirè, C.A., Simonini, G., Smith, V., Sulli, A., Tani, C., Tas, S.W., Tincani, A., Vonk, M.C., Tektonidou, M., and Mosca, M.

Abstract

Item does not contain fulltext, Recent studies have shown that people who are immunocompromised may inadvertently play a role in spurring the mutations of the virus that create new variants. This is because some immunocompromised individuals remain at risk of getting COVID-19 despite vaccination, experience more severe disease, are susceptible to being chronically infected and remain contagious for longer if they become infected and considering that immunocompromised individuals represent approximately 2% of the overall population, this aspect should be carefully considered. So far, some autoimmune rheumatic disease (ARD) patients with COVID-19 have been treated with antiviral therapies or anti-SARS-CoV-2 antibody products. However, there is no homogeneous approach to these treatment strategies. This issue was addressed within the European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) in a discussion among experts and patient's representatives in the context of the rare and complex connective tissue diseases (rCTDs) covered by the Network. ERN ReCONNET is one of the 24 ERNs launched by the European Commission in 2017 with the aim of tackling low prevalence and rare diseases that require highly specialised treatment and promoting concentration of knowledge and resources through virtual networks involving healthcare providers (HCPs) across the European Union (EU). Considering the urgent need to provide guidance not only to the rCTDs community, but also to the whole ARDs community, a multidisciplinary Task Force, including expert clinicians and European Patient Advocacy Group (ePAG) Advocates, was created in the framework of ERN ReCONNET with the aim of developing overarching principles (OP) and points-to-consider (PtC) on a homogenous approach to treat immunocompromised patients with ARDs (with a particular focus on CTDs) affected by COVID-19 using antiviral therapies and anti-SARS-CoV-2 antibody products. The present work reports the final OP

Published
2023

7. Perceived Utility of Intracranial Pressure Monitoring in Traumatic Brain Injury: A Seattle International Brain Injury Consensus Conference Consensus-Based Analysis and Recommendations

Author

Chesnut, R, Aguilera, S, Buki, A, Bulger, E, Citerio, G, Cooper, D, Arrastia, R, Diringer, M, Figaji, A, Gao, G, Geocadin, R, Ghajar, J, Harris, O, Hawryluk, G, Hoffer, A, Hutchinson, P, Joseph, M, Kitagawa, R, Manley, G, Mayer, S, Menon, D, Meyfroidt, G, Michael, D, Oddo, M, Okonkwo, D, Patel, M, Robertson, C, Rosenfeld, J, Rubiano, A, Sahuquillo, J, Servadei, F, Shutter, L, Stein, D, Stocchetti, N, Taccone, F, Timmons, S, Tsai, E, Ullman, J, Videtta, W, Wright, D, Zammit, C, Chesnut, Randall M, Aguilera, Sergio, Buki, Andras, Bulger, Eileen M, Citerio, Giuseppe, Cooper, D Jamie, Arrastia, Ramon Diaz, Diringer, Michael, Figaji, Anthony, Gao, Guoyi, Geocadin, Romergryko G, Ghajar, Jamshid, Harris, Odette, Hawryluk, Gregory W J, Hoffer, Alan, Hutchinson, Peter, Joseph, Mathew, Kitagawa, Ryan, Manley, Geoffrey, Mayer, Stephan, Menon, David K, Meyfroidt, Geert, Michael, Daniel B, Oddo, Mauro, Okonkwo, David O, Patel, Mayur B, Robertson, Claudia, Rosenfeld, Jeffrey V, Rubiano, Andres M, Sahuquillo, Juain, Servadei, Franco, Shutter, Lori, Stein, Deborah M, Stocchetti, Nino, Taccone, Fabio Silvio, Timmons, Shelly D, Tsai, Eve C, Ullman, Jamie S, Videtta, Walter, Wright, David W, Zammit, Christopher, Chesnut, R, Aguilera, S, Buki, A, Bulger, E, Citerio, G, Cooper, D, Arrastia, R, Diringer, M, Figaji, A, Gao, G, Geocadin, R, Ghajar, J, Harris, O, Hawryluk, G, Hoffer, A, Hutchinson, P, Joseph, M, Kitagawa, R, Manley, G, Mayer, S, Menon, D, Meyfroidt, G, Michael, D, Oddo, M, Okonkwo, D, Patel, M, Robertson, C, Rosenfeld, J, Rubiano, A, Sahuquillo, J, Servadei, F, Shutter, L, Stein, D, Stocchetti, N, Taccone, F, Timmons, S, Tsai, E, Ullman, J, Videtta, W, Wright, D, Zammit, C, Chesnut, Randall M, Aguilera, Sergio, Buki, Andras, Bulger, Eileen M, Citerio, Giuseppe, Cooper, D Jamie, Arrastia, Ramon Diaz, Diringer, Michael, Figaji, Anthony, Gao, Guoyi, Geocadin, Romergryko G, Ghajar, Jamshid, Harris, Odette, Hawryluk, Gregory W J, Hoffer, Alan, Hutchinson, Peter, Joseph, Mathew, Kitagawa, Ryan, Manley, Geoffrey, Mayer, Stephan, Menon, David K, Meyfroidt, Geert, Michael, Daniel B, Oddo, Mauro, Okonkwo, David O, Patel, Mayur B, Robertson, Claudia, Rosenfeld, Jeffrey V, Rubiano, Andres M, Sahuquillo, Juain, Servadei, Franco, Shutter, Lori, Stein, Deborah M, Stocchetti, Nino, Taccone, Fabio Silvio, Timmons, Shelly D, Tsai, Eve C, Ullman, Jamie S, Videtta, Walter, Wright, David W, and Zammit, Christopher

Abstract

BACKGROUND: Intracranial pressure (ICP) monitoring is widely practiced, but the indications are incompletely developed, and guidelines are poorly followed. OBJECTIVE: To study the monitoring practices of an established expert panel (the clinical working group from the Seattle International Brain Injury Consensus Conference effort) to examine the match between monitoring guidelines and their clinical decision-making and offer guidance for clinicians considering monitor insertion. METHODS: We polled the 42 Seattle International Brain Injury Consensus Conference panel members' ICP monitoring decisions for virtual patients, using matrices of presenting signs (Glasgow Coma Scale [GCS] total or GCS motor, pupillary examination, and computed tomography diagnosis). Monitor insertion decisions were yes, no, or unsure (traffic light approach). We analyzed their responses for weighting of the presenting signs in decision-making using univariate regression. RESULTS: Heatmaps constructed from the choices of 41 panel members revealed wider ICP monitor use than predicted by guidelines. Clinical examination (GCS) was by far the most important characteristic and differed from guidelines in being nonlinear. The modified Marshall computed tomography classification was second and pupils third. We constructed a heatmap and listed the main clinical determinants representing 80% ICP monitor insertion consensus for our recommendations. CONCLUSION: Candidacy for ICP monitoring exceeds published indicators for monitor insertion, suggesting the clinical perception that the value of ICP data is greater than simply detecting and monitoring severe intracranial hypertension. Monitor insertion heatmaps are offered as potential guidance for ICP monitor insertion and to stimulate research into what actually drives monitor insertion in unconstrained, real-world conditions.

Published
2023

8. Prognostication and Withdrawal of Care Decisions in Severe Traumatic Brain Injury: A Survey of The Seattle International Severe Traumatic Brain Injury Consensus Conference (SIBICC) Working Group

Author

Sarigul, B, Bell, R, Chesnut, R, Aguilera, S, Buki, A, Citerio, G, Cooper, D, Diaz-Arrastia, R, Diringer, M, Figaji, A, Gao, G, Geocadin, R, Ghajar, J, Harris, O, Hoffer, A, Hutchinson, P, Joseph, M, Kitagawa, R, Manley, G, Mayer, S, Menon, D, Meyfroidt, G, Michael, D, Oddo, M, Okonkwo, D, Patel, M, Robertson, C, Rosenfeld, J, Rubiano, A, Sahuquillo, J, Servadei, F, Shutter, L, Stein, D, Stocchetti, N, Taccone, F, Timmons, S, Tsai, E, Ullman, J, Vespa, P, Videtta, W, Wright, D, Zammit, C, Hawryluk, G, Sarigul, Buse, Bell, Randy S, Chesnut, Randall M, Aguilera, Sergio, Buki, Andras, Citerio, Giuseppe, Cooper, D James, Diaz-Arrastia, Ramon R, Diringer, Michael, Figaji, Anthony, Gao, Guoyi, Geocadin, Romer, Ghajar, Jamshid, Harris, Odette A, Hoffer, Alan, Hutchinson, Peter John, Joseph, Matthew, Kitagawa, Ryan Seiji, Manley, Geoffrey T, Mayer, Stephan, Menon, David, Meyfroidt, Geert, Michael, Daniel, Oddo, Mauro, Okonkwo, David O, Patel, Mayur B, Robertson, Claudia S, Rosenfeld, Jeffrey V, Rubiano, Andres M, Sahuquillo, Juan, Servadei, Franco, Shutter, Lori, Stein, Deborah, Stocchetti, Nino, Taccone, Fabio, Timmons, Shelly, Tsai, Eve, Ullman, Jamie S, Vespa, Paul M, Videtta, Walter, Wright, David, Zammit, Christopher, Hawryluk, Gregory, Sarigul, B, Bell, R, Chesnut, R, Aguilera, S, Buki, A, Citerio, G, Cooper, D, Diaz-Arrastia, R, Diringer, M, Figaji, A, Gao, G, Geocadin, R, Ghajar, J, Harris, O, Hoffer, A, Hutchinson, P, Joseph, M, Kitagawa, R, Manley, G, Mayer, S, Menon, D, Meyfroidt, G, Michael, D, Oddo, M, Okonkwo, D, Patel, M, Robertson, C, Rosenfeld, J, Rubiano, A, Sahuquillo, J, Servadei, F, Shutter, L, Stein, D, Stocchetti, N, Taccone, F, Timmons, S, Tsai, E, Ullman, J, Vespa, P, Videtta, W, Wright, D, Zammit, C, Hawryluk, G, Sarigul, Buse, Bell, Randy S, Chesnut, Randall M, Aguilera, Sergio, Buki, Andras, Citerio, Giuseppe, Cooper, D James, Diaz-Arrastia, Ramon R, Diringer, Michael, Figaji, Anthony, Gao, Guoyi, Geocadin, Romer, Ghajar, Jamshid, Harris, Odette A, Hoffer, Alan, Hutchinson, Peter John, Joseph, Matthew, Kitagawa, Ryan Seiji, Manley, Geoffrey T, Mayer, Stephan, Menon, David, Meyfroidt, Geert, Michael, Daniel, Oddo, Mauro, Okonkwo, David O, Patel, Mayur B, Robertson, Claudia S, Rosenfeld, Jeffrey V, Rubiano, Andres M, Sahuquillo, Juan, Servadei, Franco, Shutter, Lori, Stein, Deborah, Stocchetti, Nino, Taccone, Fabio, Timmons, Shelly, Tsai, Eve, Ullman, Jamie S, Vespa, Paul M, Videtta, Walter, Wright, David, Zammit, Christopher, and Hawryluk, Gregory

Abstract

Best practice guidelines have advanced severe traumatic brain injury (TBI) care; however, there is little that currently informs goals of care decisions and processes despite their importance and frequency. Panelists from the Seattle International severe traumatic Brain Injury Consensus Conference (SIBICC) participated in a survey consisting of 24 questions. Questions queried use of prognostic calculators, variability in and responsibility for goals of care decisions, and acceptability of neurological outcomes, as well as putative means of improving decisions that might limit care. A total of 97.6% of the 42 SIBICC panelists completed the survey. Responses to most questions were highly variable. Overall, panelists reported infrequent use of prognostic calculators, and observed variability in patient prognostication and goals of care decisions. They felt that it would be beneficial for physicians to improve consensus on what constitutes an acceptable neurological outcome as well as what chance of achieving that outcome is acceptable. Panelists felt that the public should help to define what constitutes a good outcome and expressed some support for a “nihilism guard.” More than 50% of panelists felt that if it was certain to be permanent, a vegetative state or lower severe disability would justify a withdrawal of care decision, whereas 15% felt that upper severe disability justified such a decision. Whether conceptualizing an ideal or existing prognostic calculator to predict death or an unacceptable outcome, on average a 64-69% chance of a poor outcome was felt to justify treatment withdrawal. These results demonstrate important variability in goals of care decision making and a desire to reduce this variability. Our panel of recognized TBI experts opined on the neurological outcomes and chances of those outcomes that might prompt consideration of care withdrawal; however, imprecision of prognostication and existing prognostication tools is a significant impediment t

Published
2023

9. ERN ReCONNET points to consider for treating patients living with autoimmune rheumatic diseases with antiviral therapies and anti-SARS-CoV-2 antibody products

Author

Talarico, Rosaria R., Ramirez, G. A., Barreira, S. C., Cardamone, C., Triggianese, P., Aguilera, S., Andersen, J., Avcin, T., Benistan, K., Bertsias, G., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G. R., Callens, S., Carreira, P. E., Cervera, R., Cutolo, M., Damian, L., Torre, E. Della, Faria, R., Fonseca, J. E., Galetti, I., Hachulla, E., Iaccarino, L., Jacobsen, S., Khmelinskii, N., Limper, M., Marinello, D., Meyer, A., Moroncini, G., Nagy, G., Olesinska, M., Pamfil, C., Pileckyte, M., Pistello, M., Rednic, S., Richez, C., Romão, V. C., Schneider, M., Sciascia, S., Scirè, C. A., Simonini, G., Smith, V., Sulli, A., Tani, C., Tas, S. W., Tincani, A., Vonk, M. C., Tektonidou, M., Mosca, M., Talarico, Rosaria R., Ramirez, G. A., Barreira, S. C., Cardamone, C., Triggianese, P., Aguilera, S., Andersen, J., Avcin, T., Benistan, K., Bertsias, G., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G. R., Callens, S., Carreira, P. E., Cervera, R., Cutolo, M., Damian, L., Torre, E. Della, Faria, R., Fonseca, J. E., Galetti, I., Hachulla, E., Iaccarino, L., Jacobsen, S., Khmelinskii, N., Limper, M., Marinello, D., Meyer, A., Moroncini, G., Nagy, G., Olesinska, M., Pamfil, C., Pileckyte, M., Pistello, M., Rednic, S., Richez, C., Romão, V. C., Schneider, M., Sciascia, S., Scirè, C. A., Simonini, G., Smith, V., Sulli, A., Tani, C., Tas, S. W., Tincani, A., Vonk, M. C., Tektonidou, M., and Mosca, M.

Abstract

Recent studies have shown that people who are immunocompromised may inadvertently play a role in spurring the mutations of the virus that create new variants. This is because some immunocompromised individuals remain at risk of getting COVID-19 despite vaccination, experience more severe disease, are susceptible to being chronically infected and remain contagious for longer if they become infected and considering that immunocompromised individuals represent approximately 2% of the overall population, this aspect should be carefully considered. So far, some autoimmune rheumatic disease (ARD) patients with COVID-19 have been treated with antiviral therapies or anti-SARS-CoV-2 antibody products. However, there is no homogeneous approach to these treatment strategies. This issue was addressed within the European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) in a discussion among experts and patient’s representatives in the context of the rare and complex connective tissue diseases (rCTDs) covered by the Network. ERN ReCONNET is one of the 24 ERNs launched by the European Commission in 2017 with the aim of tackling low prevalence and rare diseases that require highly specialised treatment and promoting concentration of knowledge and resources through virtual networks involving healthcare providers (HCPs) across the European Union (EU). Considering the urgent need to provide guidance not only to the rCTDs community, but also to the whole ARDs community, a multidisciplinary Task Force, including expert clinicians and European Patient Advocacy Group (ePAG) Advocates, was created in the framework of ERN ReCONNET with the aim of developing overarching principles (OP) and points-to-consider (PtC) on a homogenous approach to treat immunocompromised patients with ARDs (with a particular focus on CTDs) affected by COVID-19 using antiviral therapies and anti-SARS-CoV-2 antibody products. The present work reports the final OP, Recent studies have shown that people who are immunocompromised may inadvertently play a role in spurring the mutations of the virus that create new variants. This is because some immunocompromised individuals remain at risk of getting COVID-19 despite vaccination, experience more severe disease, are susceptible to being chronically infected and remain contagious for longer if they become infected and considering that immunocompromised individuals represent approximately 2% of the overall population, this aspect should be carefully considered. So far, some autoimmune rheumatic disease (ARD) patients with COVID-19 have been treated with antiviral therapies or anti-SARS-CoV-2 antibody products. However, there is no homogeneous approach to these treatment strategies. This issue was addressed within the European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) in a discussion among experts and patient's representatives in the context of the rare and complex connective tissue diseases (rCTDs) covered by the Network. ERN ReCONNET is one of the 24 ERNs launched by the European Commission in 2017 with the aim of tackling low prevalence and rare diseases that require highly specialised treatment and promoting concentration of knowledge and resources through virtual networks involving healthcare providers (HCPs) across the European Union (EU). Considering the urgent need to provide guidance not only to the rCTDs community, but also to the whole ARDs community, a multidisciplinary Task Force, including expert clinicians and European Patient Advocacy Group (ePAG) Advocates, was created in the framework of ERN ReCONNET with the aim of developing overarching principles (OP) and points-to-consider (PtC) on a homogenous approach to treat immunocompromised patients with ARDs (with a particular focus on CTDs) affected by COVID-19 using antiviral therapies and anti-SARS-CoV-2 antibody products. The present work reports the final

Published
2023

10. Metalloproteinases and cellular components in saliva from periodontitis patients: preliminary study

Author

Aguilera, S., Relvas, M., and Viana Da Costa, A.

Abstract

Background: Metalloproteinases (MMPs) are extracellular matrix macromolecules important in cellular development and morphogenesis, being capable of activating growth factors nearby, cell surface receptors, adhesion molecules and immune mediators [1]. Because type I collagen is the major component of the periodontal extracellular matrix, special attention is given to the role of collagenases, among them MMP-8, which is involved in the degradation of this matrix. Periodontitis (PD) is a destructive inflammatory disease of the supporting tissues of the teeth, affecting 11% of the world’s population. Disease results from the interaction between the oral biofilm and the immune system's response [2]. Moreover, salivary MMP levels are associated with aggravation of periodontitis [3, 4], but no relation with which leukocytes populations yet. Objective: Our aim is to evaluate MMP-8 salivary levels and the corresponding leukocyte populations in patients with periodontitis stage I/II, stage III/IV and healthy controls. Methods: The study includes patients from the Dental Clinic appointments of the University Clinic of IUCS (7 healthy, 5 stage I/II, 7 stage III/IV). Collection of unstimulated saliva samples, followed by quantification of MMP-8 by ELISA and cellular recovery for leucocyte analysis by flow cytometry. Results: In a small sample of 19 individuals, studied so far, we observed that PD patients had higher MPP-8 levels than healthy controls. For cellular analysis, only 3 samples were studied, 3 healthy individuals. However, it has not yet been possible to establish any association with MMP-8 levels. Conclusions: In a near future, we expect our results to allow a possible association between MMP-8 salivary levels and periodontitis disease expression - stage versus grade. Flow cytometry analyses will allow for the evaluation of the leukocyte populations in saliva and their link with MMP-8 levels, in order to find a potential biomarker for periodontitis., Scientific Letters, Vol. 1 No. Sup 1 (2023)

Published
2023
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14. The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases:insights after the first 5 years of the ERN ReCONNET

Author

Talarico, R., Aguilera, S., Alexander, T., Amoura, Z., Andersen, J., Arnaud, L., Avcin, T., Marsal Barril, S., Beretta, L., Bombardieri, S., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G. R., Cannizzo, S., Cavagna, L., Chaigne, B., Cornet, A., Corti, P., Costedoat-Chalumeau, N., Dāvidsone, Z., Doria, A., Fenech, C., Ferraris, A., Fischer-Betz, R., Fonseca, J. E., Frank, C., Gaglioti, A., Galetti, I., Guimarães, V., Hachulla, E., Holmner, M., Houssiau, F., Iaccarino, L., Jacobsen, S., Limper, M., Malfait, F., Mariette, X., Marinello, D., Martin, T., Matthews, L., Matucci-Cerinic, M., Meyer, A., Milas-Ahić, J., Moinzadeh, P., Montecucco, C., Mouthon, L., Müller-Ladner, U., Nagy, G., Patarata, E., Pileckyte, M., Pruunsild, C., Rednic, S., Romão, V. C., Schneider, M., Scirè, C. A., Smith, V., Sulli, A., Tamirou, F., Tani, C., Taruscio, D., Taulaigo, A. V., Tincani, A., Ticciati, S., Turchetti, G., van Hagen, P. M., van Laar, J. M., Vieira, A., de Vries-Bouwstra, J. K., Zschocke, J., Cutolo, M., Mosca, Marta, Talarico, R., Aguilera, S., Alexander, T., Amoura, Z., Andersen, J., Arnaud, L., Avcin, T., Marsal Barril, S., Beretta, L., Bombardieri, S., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G. R., Cannizzo, S., Cavagna, L., Chaigne, B., Cornet, A., Corti, P., Costedoat-Chalumeau, N., Dāvidsone, Z., Doria, A., Fenech, C., Ferraris, A., Fischer-Betz, R., Fonseca, J. E., Frank, C., Gaglioti, A., Galetti, I., Guimarães, V., Hachulla, E., Holmner, M., Houssiau, F., Iaccarino, L., Jacobsen, S., Limper, M., Malfait, F., Mariette, X., Marinello, D., Martin, T., Matthews, L., Matucci-Cerinic, M., Meyer, A., Milas-Ahić, J., Moinzadeh, P., Montecucco, C., Mouthon, L., Müller-Ladner, U., Nagy, G., Patarata, E., Pileckyte, M., Pruunsild, C., Rednic, S., Romão, V. C., Schneider, M., Scirè, C. A., Smith, V., Sulli, A., Tamirou, F., Tani, C., Taruscio, D., Taulaigo, A. V., Tincani, A., Ticciati, S., Turchetti, G., van Hagen, P. M., van Laar, J. M., Vieira, A., de Vries-Bouwstra, J. K., Zschocke, J., Cutolo, M., and Mosca, Marta

Abstract

In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients. It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.

Published
2022

19. Worldwide Organization of Neurocritical Care: Results from the PRINCE Study Part 1

Author

Suarez, J. I., Martin, R. H., Bauza, C., Georgiadis, A., Venkatasubba Rao, C. P., Calvillo, E., Hemphill, J. C., Sung, G., Oddo, M., Taccone, Fabio Silvio, Leroux, P. D., Layon, A. J., Sarwal, A., Ali, A., Lele, A., Jarquin-Valdivia, A. A., Misiewska-Kaczur, A., Ahmad, A., Deeb, A. M., Jabbary, A. A., Fathy, A., Chan, A., Kern, CHRISTOPH ALEXANDER, Gritsan, A., Bshabshe, A. A., Malek, A., Schiefecker, A., Neto, A. R., ALHAJJ HASSAN, Ali, Zahrani, A. R. A., Sukumaran, A. V., Sarma, A. K., Aneman, A., Kramer, A., Naidech, A., Lacerda Gallardo, A. J., Miller, A., O'Connor, A., Kim, A., Afshinnik, A., Katila, A., Paulson, A., Parra, A., Rosengart, A., Almemari, A., Sanchez, B., Ray, B., Mccrum, B., Tegedor, B. V., Nathan, B., Tan, B., Emanuel, B., Pfaulser, B., Nazliel, B., Gil, B., Hightower, B., Francis, B., Roberts, B., Chaudhry, B., Romero, C., Graffagnino, C., VANDEN BERGHE, GREET CLARA, Hobohm, C., Dias, C., Bradford, C., Basignani, C., Chang, C., Junker, C., Lazaridis, C., Mcarthur, C., Williamson, C., Hebert, C., Ethan Kahn, D., Harvey, D., Laskowitz, D. T., Milzman, D., Chung, D., Greer, D., Seder, D., Miller, D. W., Barge, D., Roberts, D., Jordan, D., Bhonagiri, D., Nair, D., Aggarwal, D. G., Kutsogiannis, D. J., Laiwattana, D., Pinto, D. B., Bautista, D., Perez, D., Herrera, E. A., Singares, E. S., Manno, E., Wilensky, E. M., Giraldo, E. A., Jenkinson, E., Yarad, E., Zavala, E., Tesoro, E., Eskiogly, E., Bershad, E. M., Rosenthal, E., Coronel, E. B., Gordon, E., Salgado, E., Poch, E. J., Eriksson, E., Taccone, F. S., Al-Suwaidan, F., Sorond, F., Bilotta, F., Goldenberg, F. D., Rosciani, F., Bass, F., Bernard, F., Julian, F. B., Rasulo, F., Rincon, F., Santos, G., Anderson, G., Henderson, G., Meyfroidt, G., Wong, G. K. C., Aguilar, G., Rodriguez-Vega, G., Tamayo, G., Johnston, G., Kapinos, G., Abrego, G. C., Paul, G., Xu, G., Domeniconi, G., Dugan, G., Murthy, H. H. K., Peled, H., Zraiki, H., Alvarez, H., Rodgers, H., Vaitkevicius, H., Schumacher, H. C., Kobata, H., Al-Jehani, H., Lopez Delgado, H. J., Olmecah, H. M., Madrinan-Navia, H., Tran, H., Seppelt, I., Schirotzek, I., Medary, I. B., Maldonado, I. L., da Silva, I. R. F., Hemphill III, J. C., Javier Provencio, J., Mora, J. E., Abdullah, J. M., Langdon, J. R., Claassen, J., de Oliveira, J., Shilkin, J., Horn, J., Teitelbaum, J., Frank, J. I., Fletcher, J. J., Berkeley, J., Andersson, KIM JIMMY, Kirkwood, J., Welbourne, J., Song, J., Domingues, J. R. S., Paxton, J., Falla, J., Lokin, J., Dissin, J., Bonomo, J., Martinez, J. E., Mejia-Mantilla, J. H., Ramirez-Arce, J., Palo, J. E., Moretti, J. I., Gonzalez, J. R. Y., Levine, J. M., Medow, J., Pou, J. A. L., Ciro, J. D., Paucar, J. L. C., Wright, J. C., Bosel, J., Martinez, J., Mijangos-Mendez, J. C., Chalela, J., Granillo, J. F., Sohal, J., Hirsch, K. G., Donaldson, K., Cummings, K., Hubner, K. E., Wartenberg, K., Goyal, K., Sheth, K., Kunze, K., O'Phelan, K., Sheehan, K., Altaweel, L., Cross, L., Barrachina, L. G., Kuisle, L., Connolyy, L. S., Tack, L., Johnson, L., Shutter, L., Pelunkova, L., Ramos-Gomez, L. A., Camputaro, L. A., Kamran Athar, M., Madhusudan, M., Hashmi, M., Mokhtari, M., Jibaja, M., Muller, M. C. A., Costilla, M., Mirski, M., Ochoa, M. E., Pegoli, M., Dujardin, M. -F., Allasia, M., Teran, M. D., Gorman, Michael Murray, Chapman, M., Amatangelo, M., Nagayama, M., Dickinson, M., Koenig, M., Moreda, M., Berman, M., De Georgia, M., Kuiper, M., O'Leary, M., Rodricks, M., Schneck, M., Torbey, M., Defilippis, M., Meeker, M., Allen, David Michael, Llano, M., Villalobos, M., Treggiari, M., Tuppeny, M., Sharaby, M., Kottapally, M., Mcnett, M., Mcbride, M., Gomez, M., Varga, M., Kumar, M., Yazbeck, M. F., Smith, M., Stevenson Porter, N., Hammond, N., Karanjia, N., Sokhal, N., Singhal, N. S., Badjatia, N., Maldonado, N., Ko, N., Marinoff, N., Hernandez Aguilar, Orisel, Krauchi, O. R., Sanchez, O., Gomez, O., Rivera, O. S., Gilvaz, P. C., Raffa, P., Varelas, P., Promsin, P., Merlani, P., Shushma, P., Allan, P., Biston, P., Vespa, P., Amorim, P., de Azambuja Rodrigues, P. M., Hopkins, P., Hantson, P., Vanamoorthy, P., Gupta, P., Garvin, R., Badenes, R., Damani, R., Helbok, R., Dhar, R., Rawal, R., Carandang, R., Guisado, R., Luengo, R. -I. G., Sajjad, R., Davis, R., Rison, R. A., Hoesch, R., Murillo, R., Smith, R., Ball, R., Beer, R., Reshi, R. A., Landry, R., Puvanendiran, S., Ansari, S., Mukaddam, S., Garg, S., Mishra, S., Clark, S., Napolitano, Silvano, Pattnaik, S., Vosylius, S., John, S., Josephson, S. A., Glickman, S., Brehaut, S. S., Shiraz, S. A., Aguilera, S., Sternberg, S., Chou, S., Vallance, S., Lasocki, S., Schoenenberger, S., Bird, S., Finfer, S., Shieber, S., Vadi, S., Samavedam, S., Cordina, S., Feske, S., Glassner, S., Dixit, S., Dowling, S., Tena, S. A., Bowling, S., Francken, S., Muehlschlegel, S., Renard, S., Poli, S., Carter, T., Bleck, T. P., Trim, T., Breitenfeld, T., Van Bui, T., Shukla, U., Sinha, V., Rajajee, V., Aiyagari, V., Mccredie, V., Svigelj, V., Verma, V., Rao, V. A., David Freeman, W., Smith, W. S., Videtta, W., Habre, W., Hall, W., Coplin, W. M., Abdo, W. F., Wittebole, X., Titova, Y., PRINCE Study Investigators, Layon, A.J., Sarwal, A., Ali, A., Lele, A., Jarquin-Valdivia, A.A., Misiewska-Kaczur, A., Ahmad, A., Deeb, A.M., Jabbary, A.A., Fathy, A., Chan, A., Kern, A., Georgiadis, A., Gritsan, A., Bshabshe, A.A., Malek, A., Schiefecker, A., Neto, A.R., Hassan, A., Zahrani, ARA, Sukumaran, A.V., Sarma, A.K., Aneman, A., Kramer, A., Naidech, A., Lacerda Gallardo, A.J., Miller, A., O'Connor, A., Kim, A., Afshinnik, A., Katila, A., Paulson, A., Parra, A., Rosengart, A., Almemari, A., Sanchez, B., Ray, B., McCrum, B., Tegedor, B.V., Nathan, B., Tan, B., Emanuel, B., Pfaulser, B., Nazliel, B., Gil, B., Hightower, B., Francis, B., Roberts, B., Chaudhry, B., Romero, C., Graffagnino, C., Berghe, C., Hobohm, C., Dias, C., Bradford, C., Basignani, C., Chang, C., Venkatasubba Rao, C.P., Junker, C., Lazaridis, C., McArthur, C., Williamson, C., Hebert, C., Ethan Kahn, D., Harvey, D., Laskowitz, D.T., Milzman, D., Chung, D., Greer, D., Seder, D., Miller, D.W., Barge, D., Roberts, D., Jordan, D., Bhonagiri, D., Nair, D., Aggarwal, D.G., Kutsogiannis, D.J., Laiwattana, D., Pinto, D.B., Bautista, D., Perez, D., Herrera, E.A., Singares, E.S., Manno, E., Wilensky, E.M., Giraldo, E.A., Jenkinson, E., Yarad, E., Zavala, E., Tesoro, E., Eskiogly, E., Bershad, E.M., Rosenthal, E., Coronel, E.B., Gordon, E., Salgado, E., Poch, E.J., Calvillo, E., Eriksson, E., Taccone, F.S., Al-Suwaidan, F., Sorond, F., Bilotta, F., Goldenberg, F.D., Rosciani, F., Bass, F., Bernard, F., Julian, F.B., Rasulo, F., Rincon, F., Santos, G., Anderson, G., Henderson, G., Meyfroidt, G., Sung, G., Wong, GKC, Aguilar, G., Rodriguez-Vega, G., Tamayo, G., Johnston, G., Kapinos, G., Abrego, G.C., Paul, G., Xu, G., Domeniconi, G., Dugan, G., Murthy, HHK, Peled, H., Zraiki, H., Alvarez, H., Rodgers, H., Vaitkevicius, H., Schumacher, H.C., Kobata, H., Al-Jehani, H., Lopez Delgado, H.J., Olmecah, H.M., Madrinan-Navia, H., Tran, H., Seppelt, I., Schirotzek, I., Medary, I.B., Maldonado, I.L., da Silva, IRF, Hemphill Iii, J.C., Javier Provencio, J., Mora, J.E., Abdullah, J.M., Langdon, J.R., Claassen, J., de Oliveira, J., Shilkin, J., Horn, J., Teitelbaum, J., Frank, J.I., Fletcher, J.J., Berkeley, J., Kim, J., Kirkwood, J., Welbourne, J., Song, J., Domingues, JRS, Paxton, J., Falla, J., Lokin, J., Dissin, J., Bonomo, J., Martinez, J.E., Mejia-Mantilla, J.H., Ramirez-Arce, J., Palo, J.E., Moretti, J.I., Suarez, J.I., Gonzalez, JRY, Levine, J.M., Medow, J., Pou, JAL, Ciro, J.D., Paucar, JLC, Wright, J.C., Bosel, J., Martinez, J., Mijangos-Mendez, J.C., Chalela, J., Granillo, J.F., Sohal, J., Hirsch, K.G., Donaldson, K., Cummings, K., Hubner, K.E., Wartenberg, K., Goyal, K., Sheth, K., Kunze, K., O'Phelan, K., Sheehan, K., Altaweel, L., Cross, L., Barrachina, L.G., Kuisle, L., Connolyy, L.S., Tack, L., Johnson, L., Shutter, L., Pelunkova, L., Ramos-Gomez, L.A., Camputaro, L.A., Kamran Athar, M., Madhusudan, M., Hashmi, M., Mokhtari, M., Jibaja, M., Muller, MCA, Costilla, M., Mirski, M., Ochoa, M.E., Pegoli, M., Dujardin, M.F., Allasia, M., Teran, M.D., Gorman, M., Chapman, M., Amatangelo, M., Nagayama, M., Dickinson, M., Koenig, M., Moreda, M., Berman, M., De Georgia, M., Kuiper, M., O'Leary, M., Rodricks, M., Schneck, M., Torbey, M., DeFilippis, M., Meeker, M., Allen, M., Llano, M., Villalobos, M., Treggiari, M., Tuppeny, M., Sharaby, M., Kottapally, M., McNett, M., McBride, M., Gomez, M., Varga, M., Kumar, M., Yazbeck, M.F., Smith, M., Stevenson Porter, N., Hammond, N., Karanjia, N., Sokhal, N., Singhal, N.S., Badjatia, N., Maldonado, N., Ko, N., Marinoff, N., Hernandez, O., Krauchi, O.R., Sanchez, O., Gomez, O., Rivera, O.S., Gilvaz, P.C., Raffa, P., Varelas, P., Promsin, P., Merlani, P., Shushma, P., Allan, P., Biston, P., Vespa, P., Amorim, P., de Azambuja Rodrigues, P.M., Hopkins, P., Hantson, P., Vanamoorthy, P., Gupta, P., Garvin, R., Badenes, R., Damani, R., Helbok, R., Dhar, R., Rawal, R., Carandang, R., Guisado, R., Luengo, R.G., Sajjad, R., Davis, R., Rison, R.A., Hoesch, R., Murillo, R., Smith, R., Ball, R., Beer, R., Reshi, R.A., Landry, R., Puvanendiran, S., Ansari, S., Mukaddam, S., Garg, S., Mishra, S., Clark, S., Napolitano, S., Pattnaik, S., Vosylius, S., John, S., Josephson, S.A., Glickman, S., Brehaut, S.S., Shiraz, S.A., Aguilera, S., Sternberg, S., Chou, S., Vallance, S., Lasocki, S., Schoenenberger, S., Bird, S., Finfer, S., Shieber, S., Vadi, S., Samavedam, S., Cordina, S., Feske, S., Glassner, S., Dixit, S., Dowling, S., Tena, S.A., Bowling, S., Francken, S., Muehlschlegel, S., Renard, S., Poli, S., Carter, T., Bleck, T.P., Trim, T., Breitenfeld, T., Van Bui, T., Shukla, U., Sinha, V., Rajajee, V., Aiyagari, V., McCredie, V., Svigelj, V., Verma, V., Rao, V.A., David Freeman, W., Smith, W.S., Videtta, W., Habre, W., Hall, W., Coplin, W.M., Abdo, W.F., Wittebole, X., Titova, Y., Intensive Care Medicine, ANS - Neuroinfection & -inflammation, Other Research, ACS - Pulmonary hypertension & thrombosis, UCL - SSS/IREC/MEDA - Pôle de médecine aiguë, and UCL - (SLuc) Service de soins intensifs

Subjects
Internationality, Scope of practice, Latin Americans, medicine.medical_treatment, lnfectious Diseases and Global Health Radboud Institute for Molecular Life Sciences [Radboudumc 4], Pharmacists, Critical Care and Intensive Care Medicine, law.invention, 0302 clinical medicine, Clinical Protocols, Central Nervous System Diseases, law, Observational study, Epidemiology, Neurocritical care, Case report form, Academic Medical Centers, Intensive care unit, Telemedicine, Europe, Intensive Care Units, Prospective, Transportation of Patients, Neurology, Practice Guidelines as Topic, Critical care, Outcomes, Original Work, Respiratory Therapy, medicine.medical_specialty, Asia, Tomography Scanners, X-Ray Computed, Critical Care, Health Personnel, Oceania, Respiratory therapist, Neurosurgery, Pharmacist, Personnel Management, Resource Allocation, Middle East, 03 medical and health sciences, Physicians, medicine, Humans, Fellowships and Scholarships, business.industry, Internship and Residency, Neurointensive care, 030208 emergency & critical care medicine, Latin America, Family medicine, North America, Neurology (clinical), business, Delivery of Health Care, 030217 neurology & neurosurgery
Abstract

Introduction Neurocritical care focuses on the care of critically ill patients with an acute neurologic disorder and has grown significantly in the past few years. However, there is a lack of data that describe the scope of practice of neurointensivists and epidemiological data on the types of patients and treatments used in neurocritical care units worldwide. To address these issues, we designed a multicenter, international, point-prevalence, cross-sectional, prospective, observational, non-interventional study in the setting of neurocritical care (PRINCE Study). Methods In this manuscript, we analyzed data from the initial phase of the study that included registration, hospital, and intensive care unit (ICU) organizations. We present here descriptive statistics to summarize data from the registration case report form. We performed the Kruskal–Wallis test followed by the Dunn procedure to test for differences in practices among world regions. Results We analyzed information submitted by 257 participating sites from 47 countries. The majority of those sites, 119 (46.3%), were in North America, 44 (17.2%) in Europe, 34 (13.3%) in Asia, 9 (3.5%) in the Middle East, 34 (13.3%) in Latin America, and 14 (5.5%) in Oceania. Most ICUs are from academic institutions (73.4%) located in large urban centers (44% > 1 million inhabitants). We found significant differences in hospital and ICU organization, resource allocation, and use of patient management protocols. The highest nursing/patient ratio was in Oceania (100% 1:1). Dedicated Advanced Practiced Providers are mostly present in North America (73.7%) and are uncommon in Oceania (7.7%) and the Middle East (0%). The presence of dedicated respiratory therapist is common in North America (85%), Middle East (85%), and Latin America (84%) but less common in Europe (26%) and Oceania (7.7%). The presence of dedicated pharmacist is highest in North America (89%) and Oceania (85%) and least common in Latin America (38%). The majority of respondents reported having a dedicated neuro-ICU (67% overall; highest in North America: 82%; and lowest in Oceania: 14%). Conclusion The PRINCE Study results suggest that there is significant variability in the delivery of neurocritical care. The study also shows it is feasible to undertake international collaborations to gather global data about the practice of neurocritical care. Electronic supplementary material The online version of this article (10.1007/s12028-019-00750-3) contains supplementary material, which is available to authorized users.

Published
2020

21. Global Survey of Outcomes of Neurocritical Care Patients: Analysis of the PRINCE Study Part 2

Author

Rao C, Suarez J, Martin R, Bauza C, Georgiadis A, Calvillo E, Hemphill J, Sung G, Oddo M, Taccone F, LeRoux P, Domeniconi G, Camputaro L, Villalobos M, Allasia M, Goldenberg F, Teran M, Rosciani F, Alvarez H, Costilla M, Videtta W, Perez D, Raffa P, Seppelt I, Rodgers H, Paxton J, Bhonagiri D, Aneman A, Jenkinson E, Bradford C, Finfer S, Yarad E, Bass F, Hammond N, O'Connor A, Bird S, Smith R, Barge D, Shilkin J, Woods W, Roberts B, O'Leary M, Vallance S, Helbok R, Beer R, Pfaulser B, Schiefecker A, Almemari A, Mukaddam S, Wittebole X, Berghe C, Dujardin M, Renard S, Hantson P, Biston P, Meyfroidt G, da Silva I, de Oliveira J, Neto A, Domingues J, Rodrigues P, Teitelbaum J, Chapman M, McCredie V, Marinoff N, Perez A, Kutsogiannis D, Bernard F, Kramer A, Moretti J, Aguilera S, Poch E, Romero C, Wong G, Song J, Xu G, Mejia-Mantilla J, Madrinan-Navia H, Martinez J, Ochoa M, Bautista D, Varga M, Gomez M, Ciro J, Gil B, Murillo R, Hernandez O, Ramirez-Arce J, Breitenfeld T, Gallardo A, Delgado H, Gonzalez J, Hache-Marliere M, Pinto D, Llano M, Salgado E, Jibaja M, Wright J, Harvey D, Verma V, Hopkins P, Chan A, Welbourne J, Dowling S, Katila A, Lasocki S, Wartenberg K, Hobohm C, Poli S, Schirotzek I, Bosel J, Schoenenberger S, Francken S, Shieber S, Kern A, Falla J, Herrera E, Gilvaz P, Goyal K, Sokhal N, Sohal J, Aggarwal D, Ray B, Pattnaik S, Garg S, Dixit S, Rawal R, Samavedam S, Madhusudan M, Paul G, Mishra S, Shushma P, Shukla U, Sinha V, Vanamoorthy P, Vadi S, Mokhtari M, Rasulo F, Pegoli M, Bilotta F, Nagayama M, Kobata H, Vosylius S, Abdullah J, Granillo J, Mijangos-Mendez J, Horn J, Muller M, Kuiper M, Abdo W, McArthur C, Newby L, Hashmi M, Shiraz S, Abrego G, Coronel E, Rivera O, Paucar J, Gomez O, Palo J, Lokin J, Misiewska-Kaczur A, Dias C, Amorim P, Andre S, Rodriguez-Vega G, Gritsan A, Titova Y, Al Jabbary A, Al Zahrani A, Pelunkova L, Zraiki H, Deeb A, Al Bshabshe A, Al-Jehani H, Al-Suwaidan F, Svigelj V, Ramos-Gomez L, Aguilar G, Badenes R, Pou J, Zavala E, Julian F, Barrachina L, Tegedor B, Tena S, Krauchi O, Tamayo G, Sanchez B, Gonzalezluengo R, Puvanendiran S, Merlani P, Laiwattana D, Promsin P, Nazliel B, Eriksson E, Chalela J, Miller D, Guisado R, Gordon E, Murthy H, Paulson A, Rajajee V, Sheehan K, Williamson C, Ball R, Allan P, Berkeley J, Muehlschlegel S, Carandang R, Hall W, Sarwal A, Damani R, Maldonado N, Tan B, Gupta P, Lazaridis C, Bershad E, Ansari S, Singares E, Manno E, Provencio J, Chaudhry B, McBride M, Dhar R, Roberts D, Allen M, Schumacher H, Habre W, Sheth K, Greer D, Kunze K, Varelas P, Tack L, Porter N, Junker C, Rodricks M, Tuppeny M, Basignani C, Napolitano S, Anderson G, Donaldson K, Davis R, Sternberg S, Giraldo E, Tran H, Coplin W, Badjatia N, Fathy A, Reshi R, Bonomo J, Seder D, Connolyy L, McCrum B, Carter T, Treggiari M, Dickinson M, Rison R, Mirski M, John S, Bleck T, Malek A, Trim T, Smith M, Athar M, Rincon F, Altaweel L, Vespa P, Emanuel B, Eskiogly E, McNett M, Sukumaran A, Shutter L, Milzman D, Glassner S, OPhelan K, Rosenthal E, Kottapally M, Smith W, Ko N, Josephson S, Kim A, Singhal N, Ahmad A, Meeker M, Hirsch K, Nair D, Chou S, Santos G, Clark S, Feske S, Henderson G, Sorond F, Vaitkevicius H, Chung D, Kim J, Amatangelo M, Kapinos G, Torbey M, Kahn D, Chang C, Koenig M, Gorman M, Langdon J, Dissin J, Cross L, Peled H, Claassen J, Ali A, Layon A, Miller A, Wilensky E, Kumar M, Levine J, Maldonado I, Schneck M, Lele A, Sarma A, Yazbeck M, Johnston G, Jarquin-Valdivia A, Johnson L, Kuisle L, Sajjad R, Glickman S, Garvin R, Parra A, DeFilippis M, Fletcher J, Freeman W, Rao V, Olmecah H, Dugan G, Medary I, Hoesch R, Brehaut S, Afshinnik A, Moreda M, Graffagnino C, Laskowitz D, Naidech A, Francis B, Berman M, Tesoro E, Medow J, Jordan D, Aiyagari V, Rosengart A, De Georgia M, Bowling S, Sharaby M, Nathan B, Landry R, Hebert C, Hubner K, Karanjia N, Hightower B, Cummings K, Kirkwood J, Frank J, Hassan A, Sanchez O, Cordina S, Mora J, Bui T, PRINCE Study Investigators, UCL - SSS/IREC/MEDA - Pôle de médecine aiguë, UCL - SSS/IREC/SLUC - Pôle St.-Luc, UCL - (SLuc) Service de soins intensifs, and Meyfroidt, Geert

Subjects
medicine.medical_specialty, IMPACT, NEUROSCIENCES, Clinical Neurology, lnfectious Diseases and Global Health Radboud Institute for Molecular Life Sciences [Radboudumc 4], TRAUMATIC BRAIN-INJURY, UNITED-STATES, Outcomes, INTENSIVE-CARE, Critical Care and Intensive Care Medicine, Logistic regression, VALIDATION, 03 medical and health sciences, 0302 clinical medicine, Critical Care Medicine, General & Internal Medicine, Observational study, Intensive care, Severity of illness, Epidemiology, Neurocritical care, Medicine, Case report form, Science & Technology, business.industry, LENGTH-OF-STAY, Glasgow Coma Scale, Neurointensive care, 030208 emergency & critical care medicine, Critical care, Prospective, Emergency medicine, PATTERNS, Neurosciences & Neurology, Neurology (clinical), business, Life Sciences & Biomedicine, CRITICALLY-ILL PATIENTS, GLASGOW COMA SCALE, 030217 neurology & neurosurgery
Abstract

Contains fulltext : 218566pub.pdf (Publisher’s version ) (Closed access) Contains fulltext : 218566pos.pdf (Author’s version postprint ) (Open Access) BACKGROUND: Neurocritical care is devoted to the care of critically ill patients with acute neurological or neurosurgical emergencies. There is limited information regarding epidemiological data, disease characteristics, variability of clinical care, and in-hospital mortality of neurocritically ill patients worldwide. We addressed these issues in the Point PRevalence In Neurocritical CarE (PRINCE) study, a prospective, cross-sectional, observational study. METHODS: We recruited patients from various intensive care units (ICUs) admitted on a pre-specified date, and the investigators recorded specific clinical care activities they performed on the subjects during their first 7 days of admission or discharge (whichever came first) from their ICUs and at hospital discharge. In this manuscript, we analyzed the final data set of the study that included patient admission characteristics, disease type and severity, ICU resources, ICU and hospital length of stay, and in-hospital mortality. We present descriptive statistics to summarize data from the case report form. We tested differences between geographically grouped data using parametric and nonparametric testing as appropriate. We used a multivariable logistic regression model to evaluate factors associated with in-hospital mortality. RESULTS: We analyzed data from 1545 patients admitted to 147 participating sites from 31 countries of which most were from North America (69%, N = 1063). Globally, there was variability in patient characteristics, admission diagnosis, ICU treatment team and resource allocation, and in-hospital mortality. Seventy-three percent of the participating centers were academic, and the most common admitting diagnosis was subarachnoid hemorrhage (13%). The majority of patients were male (59%), a half of whom had at least two comorbidities, and median Glasgow Coma Scale (GCS) of 13. Factors associated with in-hospital mortality included age (OR 1.03; 95% CI, 1.02 to 1.04); lower GCS (OR 1.20; 95% CI, 1.14 to 1.16 for every point reduction in GCS); pupillary reactivity (OR 1.8; 95% CI, 1.09 to 3.23 for bilateral unreactive pupils); admission source (emergency room versus direct admission [OR 2.2; 95% CI, 1.3 to 3.75]; admission from a general ward versus direct admission [OR 5.85; 95% CI, 2.75 to 12.45; and admission from another ICU versus direct admission [OR 3.34; 95% CI, 1.27 to 8.8]); and the absence of a dedicated neurocritical care unit (NCCU) (OR 1.7; 95% CI, 1.04 to 2.47). CONCLUSION: PRINCE is the first study to evaluate care patterns of neurocritical patients worldwide. The data suggest that there is a wide variability in clinical care resources and patient characteristics. Neurological severity of illness and the absence of a dedicated NCCU are independent predictors of in-patient mortality.

Published
2019
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24. The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET

Author

Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Antunes, AMC, Arnaud, L, Avcin, T, Beretta, L, Bombardieri, S, Burmester, GR, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Costedoat-Chalumeau, N, Doria, A, Ferraris, A, Fischer-Betz, R, Fonseca, JE, Frank, C, Gaglioti, A, Galetti, I, Grunert, J, Guimaraes, V, Hachulla, E, Houssiau, F, Iaccarino, L, Krieg, T, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Montecucco, C, Mouthon, L, Muller-Ladner, U, Rednic, S, Romao, VC, Schneider, M, Smith, V, Sulli, A, Tamirou, F, Taruscio, D, Taulaigo, AV, Terol, E, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P.M., van Laar, JM, Vieira, A, de Vries-Bouwstra, JK, Cutolo, M, Mosca, M, Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Antunes, AMC, Arnaud, L, Avcin, T, Beretta, L, Bombardieri, S, Burmester, GR, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Costedoat-Chalumeau, N, Doria, A, Ferraris, A, Fischer-Betz, R, Fonseca, JE, Frank, C, Gaglioti, A, Galetti, I, Grunert, J, Guimaraes, V, Hachulla, E, Houssiau, F, Iaccarino, L, Krieg, T, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Montecucco, C, Mouthon, L, Muller-Ladner, U, Rednic, S, Romao, VC, Schneider, M, Smith, V, Sulli, A, Tamirou, F, Taruscio, D, Taulaigo, AV, Terol, E, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P.M., van Laar, JM, Vieira, A, de Vries-Bouwstra, JK, Cutolo, M, and Mosca, M

Abstract

During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies.

Published
2021

27. [The effects of quarantine on anxiety and emotional symptoms. Results of an online survey]

Author

Domingo, Prieto M, Juan, Durán R, Nicolás, Núñez M, Iris, Delgado B, Vicente, Brito M, Mario, Ordóñez C, Ximena, Aguilera S, and Guillermo, Gabler

Subjects
Male, Depression, Quarantine, Humans, Female, Anxiety, Patient Health Questionnaire, Anxiety Disorders
Abstract

Quarantines may exacerbate the presence of emotional symptoms or anxiety.To explore the relation between time spent in lockdown and development of depressive and anxiety symptoms.A survey including the GAD anxiety and PHQ-9 depression scores was answered online by 1,488 subjects aged 36 ± 14 years (74% women), invited to participate through social networks. Both scores are validated for the Chilean population.Most responders had a private health insurance system. Sixty seven percent had clinically significant depressive symptoms and 39% had anxiety symptoms. Spending four or more weeks of lockdown (quarantine) was associated with 1.6 times higher risk of developing depressive symptoms and 2.9 times higher risk of developing anxiety symptoms. Difficulties in access to health care increased 3.3 times the risk of developing depression. Suffering a respiratory disease increased 2.39 times the risk of developing anxiety.There was a direct association between depressive and anxious symptoms, and the time spent of quarantine.

Published
2020

28. Evaluación de la infección por VIH en Chile: pronunciamiento del Comité VIH de la Academia Chilena de Medicina

Author

Ximena Aguilera S., María Elena Santolaya D., Marcelo Wolff R, Raquel Child G., and María Eugenia Pinto C

Subjects
education.field_of_study, medicine.medical_specialty, Modalities, business.industry, Public health, Public sector, Population, Public policy, Legislation, HIV Infections, General Medicine, Commission, Nursing, Political science, medicine, Confidentiality, Chile, business, education, Epidemics
Abstract

The Chilean Academy of Medicine convened a commission to evaluate the status of HIV epidemic and the national response to it, regarding its achievements, gaps and challenges, aiming to recommend actions to optimize assessment quality and national response. This publication summarizes the agreed upon opinion of its members. The epidemic is overwhelmingly sexually transmitted, predominant in homo/bisexual men. Vertical transmission is very low. An increasing number of new diagnoses is occurring, with relative over representation of foreign people lately. There is a legal guarantee of confidentiality, nondiscrimination and treatment for those affected, both in the private and public sector. All public health services have active HIV care units. Modern antiviral drugs and monitoring tests are also available. Despite these clear achievements, insufficient, occasionally inadequate public policies and certain rigid regulations thwart optimal effectivity and efficiency of the programs, contributing to the slow and incomplete compliance with international commitments. Shortcomings worth highlighting are: suboptimal educational and preventive programs directed to youngsters, vulnerable and general population; persistent underdiagnosis of infected population; cumbersome requirements to request and inform diagnostic tests, thus discouraging testing; excessive centralization and long latency of diagnosis confirmation and monitoring tests; incomplete epidemiologic analysis and public reporting of findings; non flexibility and slow updating of therapeutic guidelines; insufficient adaptation of care and drug delivery modalities to patients' needs; excessive administrative requirements at care centers and restrictive legislation for outcome and interventional clinical research. Recommendations to deal with these issues were proposed.

Published
2020

29. Caso Clínico: Agenesia pericárdica, diagnóstico imagenológico de una patología infrecuente

Author

Aguilera S.,Guillermo, Skoknic B.,Velimir, Aguirre F.,Javiera, and Alegría B.,Julia

Subjects
Diagnostic Imaging, Agenesis, Pericardium
Abstract

Resumen: La agenesia pericárdica congénita es una condición infrecuente, que generalmente cursa de forma asintomática y es diagnosticada como hallazgo radiológico. Sin embargo, se describe la asociación con malformaciones cardiacas y herniaciones del miocardio con el subsiguiente riesgo de muerte súbita. La radiografía de tórax es un pilar fundamental para la sospecha diagnóstica. Presentamos un caso clínico de una paciente de 11 años que consulta por dolor torácico y disnea, que frente a los hallazgos típicos en radiografía de tórax se sospecha agenesia pericárdica, posteriormente confirmada con TC y RM.

Published
2020

30. [Evaluation of HIV epidemic in Chile. A statement of the Chilean Academy of Medicine]

Author

Marcelo, Wolff R, María Eugenia, Pinto C, María Elena, Santolaya D, Ximena, Aguilera S, and Raquel, Child G

Subjects
Male, Pharmaceutical Preparations, Humans, Medicine, HIV Infections, Chile, Epidemics
Abstract

The Chilean Academy of Medicine convened a commission to evaluate the status of HIV epidemic and the national response to it, regarding its achievements, gaps and challenges, aiming to recommend actions to optimize assessment quality and national response. This publication summarizes the agreed upon opinion of its members. The epidemic is overwhelmingly sexually transmitted, predominant in homo/bisexual men. Vertical transmission is very low. An increasing number of new diagnoses is occurring, with relative over representation of foreign people lately. There is a legal guarantee of confidentiality, nondiscrimination and treatment for those affected, both in the private and public sector. All public health services have active HIV care units. Modern antiviral drugs and monitoring tests are also available. Despite these clear achievements, insufficient, occasionally inadequate public policies and certain rigid regulations thwart optimal effectivity and efficiency of the programs, contributing to the slow and incomplete compliance with international commitments. Shortcomings worth highlighting are: suboptimal educational and preventive programs directed to youngsters, vulnerable and general population; persistent underdiagnosis of infected population; cumbersome requirements to request and inform diagnostic tests, thus discouraging testing; excessive centralization and long latency of diagnosis confirmation and monitoring tests; incomplete epidemiologic analysis and public reporting of findings; non flexibility and slow updating of therapeutic guidelines; insufficient adaptation of care and drug delivery modalities to patients' needs; excessive administrative requirements at care centers and restrictive legislation for outcome and interventional clinical research. Recommendations to deal with these issues were proposed.

Published
2020

31. Metastatic Versus Osteoporotic Vertebral Fractures on MRI: A Blinded, Multicenter, and Multispecialty Observer Agreement Evaluation

Author

Arana E, Kovacs F, Royuela A, Asenjo B, Nagib F, Perez-Aguilera S, Dejoz M, Cabrera-Zubizarreta A, Garcia-Hidalgo Y, Estremera A, and Spanish Back Pain Res Network Task

Abstract

Background: MRI is assumed to be valid for distinguishing metastatic vertebral fractures (MVFs) from osteoporotic vertebral fractures (OVFs). This study assessed (1) concordance between the image-based diagnosis of MVF versus OVF and the reference (biopsy or follow-up of >6 months), (2) interobserver and intraobserver agreement on key imaging findings and the diagnosis of MVF versus OVF, and (3) whether disclosing a patient's history of cancer leads to variations in diagnosis, concordance, or agreement. Patients and Methods: This retrospective cohort study included clinical data and imaging from 203 patients with confirmed MVF or OVF provided to 25 clinicians (neurosurgeons, radiologists, orthopedic surgeons, and radiation oncologists). From January 2018 through October 2018, the clinicians interpreted images in conditions as close as possible to routine practice. Each specialist assessed data twice, with a minimum 6-week interval, blinded to assessments made by other clinicians and to their own previous assessments. The kappa statistic was used to assess interobserver and intraobserver agreement on key imaging findings, diagnosis (MVF vs OVF), and concordance with the reference. Subgroup analyses were based on clinicians' specialty, years of experience, and complexity of the hospital where they worked. Results: For diagnosis of MVF versus OVF, interobserver agreement was fair, whereas intraobserver agreement was substantial. Only the latter improved to almost perfect when a patient's history of cancer was disclosed. Interobserver agreement for key imaging findings was fair or moderate, whereas intraobserver agreement on key imaging findings was moderate or substantial. Concordance between the diagnosis of MVF versus OVF and the reference was moderate. Results were similar regardless of clinicians' specialty, experience, and hospital category. Conclusions: When MRI is used to distinguish MVF versus OVF, interobserver agreement and concordance with the reference were moderate. These results cast doubt on the reliability of basing such a diagnosis on MRI in routine practice.

Published
2020

33. A management algorithm for adult patients with both brain oxygen and intracranial pressure monitoring: the Seattle International Severe Traumatic Brain Injury Consensus Conference (SIBICC)

Author

Chesnut, R, Aguilera, S, Buki, A, Bulger, E, Citerio, G, Cooper, D, Arrastia, R, Diringer, M, Figaji, A, Gao, G, Geocadin, R, Ghajar, J, Harris, O, Hoffer, A, Hutchinson, P, Joseph, M, Kitagawa, R, Manley, G, Mayer, S, Menon, D, Meyfroidt, G, Michael, D, Oddo, M, Okonkwo, D, Patel, M, Robertson, C, Rosenfeld, J, Rubiano, A, Sahuquillo, J, Servadei, F, Shutter, L, Stein, D, Stocchetti, N, Taccone, F, Timmons, S, Tsai, E, Ullman, J, Vespa, P, Videtta, W, Wright, D, Zammit, C, Hawryluk, G, Chesnut, Randall, Aguilera, Sergio, Buki, Andras, Bulger, Eileen, Citerio, Giuseppe, Cooper, D Jamie, Arrastia, Ramon Diaz, Diringer, Michael, Figaji, Anthony, Gao, Guoyi, Geocadin, Romer, Ghajar, Jamshid, Harris, Odette, Hoffer, Alan, Hutchinson, Peter, Joseph, Mathew, Kitagawa, Ryan, Manley, Geoffrey, Mayer, Stephan, Menon, David K, Meyfroidt, Geert, Michael, Daniel B, Oddo, Mauro, Okonkwo, David, Patel, Mayur, Robertson, Claudia, Rosenfeld, Jeffrey V, Rubiano, Andres M, Sahuquillo, Juan, Servadei, Franco, Shutter, Lori, Stein, Deborah, Stocchetti, Nino, Taccone, Fabio Silvio, Timmons, Shelly, Tsai, Eve, Ullman, Jamie S, Vespa, Paul, Videtta, Walter, Wright, David W, Zammit, Christopher, Hawryluk, Gregory W J, Chesnut, R, Aguilera, S, Buki, A, Bulger, E, Citerio, G, Cooper, D, Arrastia, R, Diringer, M, Figaji, A, Gao, G, Geocadin, R, Ghajar, J, Harris, O, Hoffer, A, Hutchinson, P, Joseph, M, Kitagawa, R, Manley, G, Mayer, S, Menon, D, Meyfroidt, G, Michael, D, Oddo, M, Okonkwo, D, Patel, M, Robertson, C, Rosenfeld, J, Rubiano, A, Sahuquillo, J, Servadei, F, Shutter, L, Stein, D, Stocchetti, N, Taccone, F, Timmons, S, Tsai, E, Ullman, J, Vespa, P, Videtta, W, Wright, D, Zammit, C, Hawryluk, G, Chesnut, Randall, Aguilera, Sergio, Buki, Andras, Bulger, Eileen, Citerio, Giuseppe, Cooper, D Jamie, Arrastia, Ramon Diaz, Diringer, Michael, Figaji, Anthony, Gao, Guoyi, Geocadin, Romer, Ghajar, Jamshid, Harris, Odette, Hoffer, Alan, Hutchinson, Peter, Joseph, Mathew, Kitagawa, Ryan, Manley, Geoffrey, Mayer, Stephan, Menon, David K, Meyfroidt, Geert, Michael, Daniel B, Oddo, Mauro, Okonkwo, David, Patel, Mayur, Robertson, Claudia, Rosenfeld, Jeffrey V, Rubiano, Andres M, Sahuquillo, Juan, Servadei, Franco, Shutter, Lori, Stein, Deborah, Stocchetti, Nino, Taccone, Fabio Silvio, Timmons, Shelly, Tsai, Eve, Ullman, Jamie S, Vespa, Paul, Videtta, Walter, Wright, David W, Zammit, Christopher, and Hawryluk, Gregory W J

Abstract

Background: Current guidelines for the treatment of adult severe traumatic brain injury (sTBI) consist of high-quality evidence reports, but they are no longer accompanied by management protocols, as these require expert opinion to bridge the gap between published evidence and patient care. We aimed to establish a modern sTBI protocol for adult patients with both intracranial pressure (ICP) and brain oxygen monitors in place. Methods: Our consensus working group consisted of 42 experienced and actively practicing sTBI opinion leaders from six continents. Having previously established a protocol for the treatment of patients with ICP monitoring alone, we addressed patients who have a brain oxygen monitor in addition to an ICP monitor. The management protocols were developed through a Delphi-method-based consensus approach and were finalized at an in-person meeting. Results: We established three distinct treatment protocols, each with three tiers whereby higher tiers involve therapies with higher risk. One protocol addresses the management of ICP elevation when brain oxygenation is normal. A second addresses management of brain hypoxia with normal ICP. The third protocol addresses the situation when both intracranial hypertension and brain hypoxia are present. The panel considered issues pertaining to blood transfusion and ventilator management when designing the different algorithms. Conclusions: These protocols are intended to assist clinicians in the management of patients with both ICP and brain oxygen monitors but they do not reflect either a standard-of-care or a substitute for thoughtful individualized management. These protocols should be used in conjunction with recommendations for basic care, management of critical neuroworsening and weaning treatment recently published in conjunction with the Seattle International Brain Injury Consensus Conference.

Published
2020

37. THU0229 HSA-MIR-513C-3P OVEREXPRESSION DECREASES XBP-1S CORRELATING WITH INCREASED INFLAMMATION AND AUTOANTIBODIES IN SALIVARY GLANDS FROM SJÖGREN’S SYNDROME PATIENTS

Author

Carvajal, P., primary, Aguilera, S., additional, Heathcote, B., additional, Castro, I., additional, Jara, D., additional, Barrera, M. J., additional, Maracaja, V., additional, González, S., additional, Aliaga, V., additional, Molina, C., additional, and González, M. J., additional

Published
2020
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42. Latitude gradient influences the age of onset of rheumatoid arthritis

Author

Group, G.-R., Ramos-Remus, C., Ramirez-Gomez, A., Brambila-Barba, V., Barajas-Ochoa, A., Castillo-Ortiz, J.D., Adebajo, A.O., Espinoza, L.R., Aceves-Avila, F.J., Sanchez-Gonzalez, J.M., Boudersa, N., Slimani, S., Ladjouze-Rezig, A., Diaz, M.P., Kirmayr, K.I., Asnal, C.A., Catoggio, L.J., Citera, G., Casado, G.C., Alvarez, A.P., Pisoni, C.N., Benavente, E. Diez, Lopez-Cabanillas, A., Baez, R.M., Pons-Estel, B.A., Sacnun, M.P., Cavallasca, J.A., Paniego, R.H., Proudman, S.M., Thomas, R., Major, G., Mathers, D.M., Schrieber, L., Haq, S.A., Islam, N., Dessein, P.H., Muhlen, C.A. Von, Bianchi, W.A., Castelar-Pinheiro, G. da Rocha, Feldman-Pollak, D., Cossermelli, W., Bonfiglioli, K.R., Giorgi, R.D., Zabsonre-Tiendrebeogo, W.J., Russell, A.S., Olaru, L., Karsh, J., Fuentealba, C., Aguilera, S., Castro-Esparza, I.H., Burgos, P.I., Neira, O., Li, Z.-G., Tam, L.-S., Mok, M.Y., Medina, Y.F., Moreno-Alvarez, M.J., Zuniga-Vera, A.E., Vera, C., Quezada, I., Moreno, I.M., Calapaqui, W., El-Mardenly, G., Salama, M.S., Ragab, G., Hadidi, T., Gado, K., Leirisalo-Repo, M., Tuompo, R., Koivuniemi, R., Berenbaum, F., Allanore, Y., Constantin, A., Buttgereit, F., Schulze-Koops, H., Liz, M., Dey, D., Alonzo-Borjas, H.D., Santiago-Pastelin, C.B., Cuellar-Cruz, V., Dharmanand, B.G., Yathish, G.C., Akerkar, S.M., Malaviya, A.N., Ahmadzadeh, A., Hasunuma, T., Owino, B.O., Pacheco-Tena, C., Frausto-Arenas, A., Madrid-Cernas, A.A. De la, Cardona-Cabrera, R., Centeno-Valadez, J.D., Rodriguez-Torres, I.M., Vaidya, B., Gupta, A.K., Harrison, A.A., Grainger, R., Nwankwo, H.M., Diamantopoulos, A.P., Maland, E., et al., Jansen, T.L., Riel, P. van, Nunez-Sotelo, C.M., Villegas-Morales, S., Rheumatology, AII - Inflammatory diseases, Experimental Immunology, Clinical Immunology and Rheumatology, Clinicum, University of Helsinki, Reumatologian yksikkö, and HUS Internal Medicine and Rehabilitation

Subjects
Male, rheumatoid arthritis, Multivariate analysis, inequality, Cross-sectional study, Severity of Illness Index, DISEASE, Arthritis, Rheumatoid, 0302 clinical medicine, Surveys and Questionnaires, Epidemiology, EPIDEMIOLOGY, 030212 general & internal medicine, Age of Onset, RISK, Medicine(all), General Medicine, ASSOCIATION, Middle Aged, Prognosis, Pollution, PREVALENCE, Rheumatoid arthritis, Cohort, Disease Progression, Female, HEALTH, Adult, medicine.medical_specialty, UNITED-STATES, Tropic of Cancer, Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18], Environmental, 03 medical and health sciences, Rheumatology, Severity of illness, medicine, Humans, COHORT, METAANALYSIS, 030203 arthritis & rheumatology, Geoepidemiology, business.industry, AIR-POLLUTION, medicine.disease, Cross-Sectional Studies, 3121 General medicine, internal medicine and other clinical medicine, Physical therapy, Age of onset, business, Demography
Abstract

The age of onset of rheumatoid arthritis (RA) is an important outcome predictor. Northern countries report an age of RA onset of around 50 years, but apparently, variability exists across different geographical regions. The objective of the present study is to assess whether the age of onset of RA varies across latitudes worldwide. In a proof-of-concept cross-sectional worldwide survey, rheumatologists from preselected cities interviewed 20 consecutive RA patients regarding the date of RA onset (RAO, when the patient first noted a swollen joint). Other studied variables included location of each city, rheumatologist settings, latitudes (10° increments, south to north), longitudes (three regions), intracountry consistency, and countries’ Inequality-adjusted Human Development Index (IHDI). Data from 2481 patients (82% females) were obtained from 126 rheumatologists in 77 cities of 41 countries. Worldwide mean age of RAO was 44 ± 14 years (95% CI 44–45). In 28% of patients, RA began before age 36 years and before age 46 years in 50% of patients. RAO was 8 years earlier around the Tropic of Cancer when compared with northern latitudes (p 2 0.045, p 2 0.5). RA often begins at an early age and onset varies across latitudes worldwide. We postulate that countries’ developmental status and their geographical and geomagnetic location influence the age of RAO.

Published
2017
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46. Severe alterations in expression and localisation of (alpha)6(beta)4 integrin in salivary gland acini from patients with Sjogren syndrome

Author

Velozo, J., Aguilera, S., Alliende, C., Ewert, P., Molina, C., Perez, P., Leyton, L., Quest, A., Brito, M., Gonzalez, S., Leyton, C., Hermoso, M., Romo, R., and Gonzalez, M.-J.

Subjects
Sjogren's syndrome -- Research, Sjogren's syndrome -- Genetic aspects, Gene expression -- Research, Salivary glands -- Research, Salivary glands -- Genetic aspects, Integrins -- Research, Health
Published
2009

49. A management algorithm for patients with intracranial pressure monitoring: the Seattle International Severe Traumatic Brain Injury Consensus Conference (SIBICC)

Author

Hawryluk, G, Aguilera, S, Buki, A, Bulger, E, Citerio, G, Cooper, D, Arrastia, R, Diringer, M, Figaji, A, Gao, G, Geocadin, R, Ghajar, J, Harris, O, Hoffer, A, Hutchinson, P, Joseph, M, Kitagawa, R, Manley, G, Mayer, S, Menon, D, Meyfroidt, G, Michael, D, Oddo, M, Okonkwo, D, Patel, M, Robertson, C, Rosenfeld, J, Rubiano, A, Sahuquillo, J, Servadei, F, Shutter, L, Stein, D, Stocchetti, N, Taccone, F, Timmons, S, Tsai, E, Ullman, J, Vespa, P, Videtta, W, Wright, D, Zammit, C, Chesnut, R, Hawryluk, Gregory W. J., Aguilera, Sergio, Buki, Andras, Bulger, Eileen, Citerio, Giuseppe, Cooper, D. Jamie, Arrastia, Ramon Diaz, Diringer, Michael, Figaji, Anthony, Gao, Guoyi, Geocadin, Romergryko, Ghajar, Jamshid, Harris, Odette, Hoffer, Alan, Hutchinson, Peter, Joseph, Mathew, Kitagawa, Ryan, Manley, Geoffrey, Mayer, Stephan, Menon, David K., Meyfroidt, Geert, Michael, Daniel B., Oddo, Mauro, Okonkwo, David, Patel, Mayur, Robertson, Claudia, Rosenfeld, Jeffrey V., Rubiano, Andres M., Sahuquillo, Juan, Servadei, Franco, Shutter, Lori, Stein, Deborah, Stocchetti, Nino, Taccone, Fabio Silvio, Timmons, Shelly, Tsai, Eve, Ullman, Jamie S., Vespa, Paul, Videtta, Walter, Wright, David W., Zammit, Christopher, Chesnut, Randall M., Hawryluk, G, Aguilera, S, Buki, A, Bulger, E, Citerio, G, Cooper, D, Arrastia, R, Diringer, M, Figaji, A, Gao, G, Geocadin, R, Ghajar, J, Harris, O, Hoffer, A, Hutchinson, P, Joseph, M, Kitagawa, R, Manley, G, Mayer, S, Menon, D, Meyfroidt, G, Michael, D, Oddo, M, Okonkwo, D, Patel, M, Robertson, C, Rosenfeld, J, Rubiano, A, Sahuquillo, J, Servadei, F, Shutter, L, Stein, D, Stocchetti, N, Taccone, F, Timmons, S, Tsai, E, Ullman, J, Vespa, P, Videtta, W, Wright, D, Zammit, C, Chesnut, R, Hawryluk, Gregory W. J., Aguilera, Sergio, Buki, Andras, Bulger, Eileen, Citerio, Giuseppe, Cooper, D. Jamie, Arrastia, Ramon Diaz, Diringer, Michael, Figaji, Anthony, Gao, Guoyi, Geocadin, Romergryko, Ghajar, Jamshid, Harris, Odette, Hoffer, Alan, Hutchinson, Peter, Joseph, Mathew, Kitagawa, Ryan, Manley, Geoffrey, Mayer, Stephan, Menon, David K., Meyfroidt, Geert, Michael, Daniel B., Oddo, Mauro, Okonkwo, David, Patel, Mayur, Robertson, Claudia, Rosenfeld, Jeffrey V., Rubiano, Andres M., Sahuquillo, Juan, Servadei, Franco, Shutter, Lori, Stein, Deborah, Stocchetti, Nino, Taccone, Fabio Silvio, Timmons, Shelly, Tsai, Eve, Ullman, Jamie S., Vespa, Paul, Videtta, Walter, Wright, David W., Zammit, Christopher, and Chesnut, Randall M.

Abstract

Background: Management algorithms for adult severe traumatic brain injury (sTBI) were omitted in later editions of the Brain Trauma Foundation’s sTBI Management Guidelines, as they were not evidence-based. Methods: We used a Delphi-method-based consensus approach to address management of sTBI patients undergoing intracranial pressure (ICP) monitoring. Forty-two experienced, clinically active sTBI specialists from six continents comprised the panel. Eight surveys iterated queries and comments. An in-person meeting included whole- and small-group discussions and blinded voting. Consensus required 80% agreement. We developed heatmaps based on a traffic-light model where panelists’ decision tendencies were the focus of recommendations. Results: We provide comprehensive algorithms for ICP-monitor-based adult sTBI management. Consensus established 18 interventions as fundamental and ten treatments not to be used. We provide a three-tier algorithm for treating elevated ICP. Treatments within a tier are considered empirically equivalent. Higher tiers involve higher risk therapies. Tiers 1, 2, and 3 include 10, 4, and 3 interventions, respectively. We include inter-tier considerations, and recommendations for critical neuroworsening to assist the recognition and treatment of declining patients. Novel elements include guidance for autoregulation-based ICP treatment based on MAP Challenge results, and two heatmaps to guide (1) ICP-monitor removal and (2) consideration of sedation holidays for neurological examination. Conclusions: Our modern and comprehensive sTBI-management protocol is designed to assist clinicians managing sTBI patients monitored with ICP-monitors alone. Consensus-based (class III evidence), it provides management recommendations based on combined expert opinion. It reflects neither a standard-of-care nor a substitute for thoughtful individualized management.

Published
2019

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