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2. Disease‐Modifying Therapies and Coronavirus Disease 2019 Severity in Multiple Sclerosis

Author

Sormani, Maria P, De Rossi, Nicola, Schiavetti, Irene, Carmisciano, Luca, Cordioli, Cinzia, Moiola, Lucia, Radaelli, Marta, Immovilli, Paolo, Capobianco, Marco, Trojano, Maria, Zaratin, Paola, Tedeschi, Gioacchino, Comi, Giancarlo, Battaglia, Mario A, Patti, Francesco, Salvetti, Marco, Nozzolillo, Agostino, Bellacosa, Alessandra, Protti, Alessandra, Di Sapio, Alessia, Signori, Alessio, Petrone, Alfredo, Bisecco, Alvino, Iovino, Aniello, Dutto, Anna, Repice, Anna Maria, Conte, Antonella, Bertolotto, Antonio, Bosco, Antonio, Gallo, Antonio, Zito, Antonio, Sartori, Arianna, Giometto, Bruno, Tortorella, Carla, Antozzi, Carlo, Pozzilli, Carlo, Mancinelli, Chiara Rosa, Zanetta, Chiara, Cordano, Christian, Scandellari, Cinzia, Guaschino, Clara, Gasperini, Claudio, Solaro, Claudio, Fioretti, Cristina, Bezzini, Daiana, Marastoni, Damiano, Paolicelli, Damiano, Vecchio, Domizia, Landi, Doriana, Bucciantini, Elisabetta, Pedrazzoli, Elisabetta, Signoriello, Elisabetta, Sbragia, Elvira, Susani, Emanuela Laura, Curti, Erica, Milano, Eva, Marinelli, Fabiana, Camilli, Federico, Boneschi, Filippo Martinelli, Govone, Flora, Bovis, Francesca, Calabria, Francesca, Caleri, Francesca, Rinaldi, Francesca, Vitetta, Francesca, Corea, Francesco, Crescenzo, Francesco, Teatini, Francesco, Tabiadon, Giulietta, Granella, Franco, Boffa, Giacomo, Lus, Giacomo, Brichetto, Giampaolo, Maniscalco, Giorgia Teresa, Borriello, Giovanna, De Luca, Giovanna, Konrad, Giovanna, Vaula, Giovanna, Marfia, Girolama Alessandra, Mallucci, Giulia, Liberatore, Giuseppe, Salemi, Giuseppe, Miele, Giuseppina, Sibilia, Grazia, Pesci, Ilaria, Brambilla, Laura, Lopiano, Leonardo, Sinisi, Leonardo, Pasquali, Livia, Saraceno, Lorenzo, Chiveri, Luca, Mancinelli, Luca, and Grimaldi, Luigi ME

Subjects
Pneumonia & Influenza, Neurodegenerative, Clinical Research, Autoimmune Disease, Brain Disorders, Lung, Multiple Sclerosis, Pneumonia, Neurosciences, Neurological, Good Health and Well Being, Adolescent, Adult, Aged, Aged, 80 and over, Antibodies, Monoclonal, Humanized, COVID-19, Dimethyl Fumarate, Female, Fingolimod Hydrochloride, Hospitalization, Humans, Immunologic Factors, Immunosuppressive Agents, Intensive Care Units, Interferons, Male, Middle Aged, Mortality, Natalizumab, SARS-CoV-2, Severity of Illness Index, Young Adult, Musc-19 Study Group, Clinical Sciences, Neurology & Neurosurgery
Abstract

ObjectiveThis study was undertaken to assess the impact of immunosuppressive and immunomodulatory therapies on the severity of coronavirus disease 2019 (COVID-19) in people with multiple sclerosis (PwMS).MethodsWe retrospectively collected data of PwMS with suspected or confirmed COVID-19. All the patients had complete follow-up to death or recovery. Severe COVID-19 was defined by a 3-level variable: mild disease not requiring hospitalization versus pneumonia or hospitalization versus intensive care unit (ICU) admission or death. We evaluated baseline characteristics and MS therapies associated with severe COVID-19 by multivariate and propensity score (PS)-weighted ordinal logistic models. Sensitivity analyses were run to confirm the results.ResultsOf 844 PwMS with suspected (n = 565) or confirmed (n = 279) COVID-19, 13 (1.54%) died; 11 of them were in a progressive MS phase, and 8 were without any therapy. Thirty-eight (4.5%) were admitted to an ICU; 99 (11.7%) had radiologically documented pneumonia; 96 (11.4%) were hospitalized. After adjusting for region, age, sex, progressive MS course, Expanded Disability Status Scale, disease duration, body mass index, comorbidities, and recent methylprednisolone use, therapy with an anti-CD20 agent (ocrelizumab or rituximab) was significantly associated (odds ratio [OR] = 2.37, 95% confidence interval [CI] = 1.18-4.74, p = 0.015) with increased risk of severe COVID-19. Recent use (

Published
2021

5. The first global landscape analysis of multiple sclerosis research funding.

Author

Bebo, Bruce, Coetzee, Tim, Gray, Emma, Helme, Anne, Kanellis, Pamela, Landsman, Douglas, Mai, Michaela, Martinez de la Cruz, Beatriz, Morahan, Julia, Plassart, Emmanuelle, Pickrell, Baylee, Rawlings, Sarah, Skovgaard, Lasse, Zaratin, Paola, and Rechtman, Lindsay

Subjects
NONPROFIT organizations, CURRENT distribution, CENTRAL nervous system, MULTIPLE sclerosis, SCIENTIFIC community
Abstract

Introduction: Multiple sclerosis (MS) is an immune-mediated central nervous system disorder and a growing global health challenge affecting nearly 3 million people worldwide. Incidence and prevalence continue to increase with no known cause or cure. Globally governments and non-profit organizations fund research toward better understanding of and treatments for multiple sclerosis. Methods: This study identified MS research projects funded between 2021 and 2023 by government and non-profit organization sources. Projects were described by type of scientific approach, Pathways to Cure research category (i.e. Stop, Restore, End), and other key characteristics. Results: Over 2,300 MS research projects were identified through 16 non-profit MS organizations and 18 government databases. The overall global portfolio of these projects is valued at nearly one and a half billion Euros. The majority of projects were classified in the Stop category (60%). Research collaboration occurs in many forms among the research community; around 272 projects were reported to be co-funded. Conclusion: Global MS research collaboration will accelerate progress toward increased knowledge, effective treatments, improved health outcomes, and ultimately cures for MS. This landscape analysis highlights the current distribution of MS research investment between topics and begins to suggest where the MS community should focus to increase potential impact for current and future endeavors. [ABSTRACT FROM AUTHOR]

Published
2024
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11. The Italian multiple sclerosis register

Author

Trojano, Maria, Bergamaschi, Roberto, Amato, Maria Pia, Comi, Giancarlo, Ghezzi, Angelo, Lepore, Vito, Marrosu, Maria Giovanna, Mosconi, Paola, Patti, Francesco, Ponzio, Michela, Zaratin, Paola, Battaglia, Mario Alberto, and on behalf of the Italian Multiple Sclerosis Register Centers Group

Published
2019
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16. The agenda of the global patient reported outcomes for multiple sclerosis (PROMS) initiative: Progresses and open questions

Author

Zaratin, Paola, primary, Vermersch, Patrick, additional, Amato, Maria Pia, additional, Brichetto, Giampaolo, additional, Coetzee, Timothy, additional, Cutter, Gary, additional, Edan, Gilles, additional, Giovannoni, Gavin, additional, Gray, Emma, additional, Hartung, Hans Peter, additional, Hobart, Jeremy, additional, Helme, Anne, additional, Hyde, Robert, additional, Khan, Usman, additional, Leocani, Letizia, additional, Mantovani, Lorenzo Giovanni, additional, McBurney, Robert, additional, Montalban, Xavier, additional, Penner, Iris-Katharina, additional, Uitdehaag, Bernard M.J., additional, Valentine, Pamela, additional, Weiland, Helga, additional, Bertorello, Deborah, additional, Battaglia, Mario Alberto, additional, Baneke, Peer, additional, and Comi, Giancarlo, additional

Published
2022
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17. A Systematic Review of Patient Engagement Experiences in Brain Disorders

Author

Bertorello,Deborah, Brichetto,Giampaolo, Folkvord,Frans, Theben,Alexandra, Zaratin,Paola, Bertorello,Deborah, Brichetto,Giampaolo, Folkvord,Frans, Theben,Alexandra, and Zaratin,Paola

Abstract

Deborah Bertorello,1 Giampaolo Brichetto,1 Frans Folkvord,2,3 Alexandra Theben,4 Paola Zaratin1 1Italian Multiple Sclerosis Society Foundation, Genoa, Italy; 2Open Evidence Research, Barcelona, Spain; 3Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences, Tilburg University, Tilburg, the Netherlands; 4Department of Management, Humanities, Law and Society, UPF-Barcelona School of Management, Barcelona, SpainCorrespondence: Deborah Bertorello, Italian Multiple Sclerosis Society Foundation, Via Operai, 40, Genoa, 16149, Italy, Tel + 39 010 2713 247, Fax + 39 010 2713 205, Email deborah.bertorello@aism.itBackground: Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce.Aim: To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation.Methods: Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria.Results: In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of

Published
2022

18. Charting a global research strategy for progressive MS-An international progressive MS Alliance proposal

Author

Thompson, Alan J., Carroll, William, Ciccarelli, Olga, Comi, Giancarlo, Cross, Anne, Donnelly, Alexis, Feinstein, Anthony, Fox, Robert J., Helme, Anne, Hohlfeld, Reinhard, Hyde, Robert, Kanellis, Pamela, Landsman, Douglas, Lubetzki, Catherine, Marrie, Ruth Ann, Morahan, Julia, Montalban, Xavier, Musch, Bruno, Rawlings, Sarah, Salvetti, Marco, Sellebjerg, Finn, Sincock, Caroline, Smith, Kathryn E., Strum, Jon, Zaratin, Paola, Coetzee, Timothy, Thompson, Alan J., Carroll, William, Ciccarelli, Olga, Comi, Giancarlo, Cross, Anne, Donnelly, Alexis, Feinstein, Anthony, Fox, Robert J., Helme, Anne, Hohlfeld, Reinhard, Hyde, Robert, Kanellis, Pamela, Landsman, Douglas, Lubetzki, Catherine, Marrie, Ruth Ann, Morahan, Julia, Montalban, Xavier, Musch, Bruno, Rawlings, Sarah, Salvetti, Marco, Sellebjerg, Finn, Sincock, Caroline, Smith, Kathryn E., Strum, Jon, Zaratin, Paola, and Coetzee, Timothy

Abstract

Background: Progressive forms of multiple sclerosis (MS) affect more than 1 million individuals globally. Recent approvals of ocrelizumab for primary progressive MS and siponimod for active secondary progressive MS have opened the therapeutic door, though results from early trials of neuroprotective agents have been mixed. The recent introduction of the term 'active' secondary progressive MS into the therapeutic lexicon has introduced potential confusion to disease description and thereby clinical management. Objective: This paper reviews recent progress, highlights continued knowledge and proposes, on behalf of the International Progressive MS Alliance, a global research strategy for progressive MS. Methods: Literature searches of PubMed between 2015 and May, 2021 were conducted using the search terms "progressive multiple sclerosis", "primary progressive multiple sclerosis", "secondary progressive MS". Proposed strategies were developed through a series of in-person and virtual meetings of the International Progressive MS Alliance Scientific Steering Committee. Results: Sustaining and accelerating progress will require greater understanding of underlying mechanisms, identification of potential therapeutic targets, biomarker discovery and validation, and conduct of clinical trials with improved trial design. Encouraging developments in symptomatic and rehabilitative interventions are starting to address ongoing challenges experienced by people with progressive MS. Conclusion: We need to manage these challenges and realise the opportunities in the context of a global research strategy, which will improve quality of life for people with progressive MS.

Published
2022

21. Correction to: The Italian multiple sclerosis register

Author

Trojano, Maria, Bergamaschi, Roberto, Amato, Maria Pia, Comi, Giancarlo, Ghezzi, Angelo, Lepore, Vito, Marrosu, Maria Giovanna, Mosconi, Paola, Patti, Francesco, Ponzio, Michela, Zaratin, Paola, Battaglia, Mario Alberto, and Italian Multiple Sclerosis Register Centers Group

Published
2019
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23. Additional file 1 of Collective health research assessment: developing a tool to measure the impact of multistakeholder research initiatives

Author

Kork, Anna-Aurora, Antonini, Carla, García-Torea, Nicolás, Luque-Vílchez, Mercedes, Costa, Ericka, Senn, Juliette, Larrinaga, Carlos, Bertorello, Deborah, Brichetto, Giampaolo, Zaratin, Paola, and Andreaus, Michele

Abstract

Additional file 1. Distribution of core and additional indicators per dimension and measurement aspect in MULTI-ACT Master Scorecard as in Digital Toolbox.

Published
2022
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24. Additional file 2 of Collective health research assessment: developing a tool to measure the impact of multistakeholder research initiatives

Author

Kork, Anna-Aurora, Antonini, Carla, García-Torea, Nicolás, Luque-Vílchez, Mercedes, Costa, Ericka, Senn, Juliette, Larrinaga, Carlos, Bertorello, Deborah, Brichetto, Giampaolo, Zaratin, Paola, and Andreaus, Michele

Abstract

Additional file 2. Examples of indicators extracted from the MULTI-ACT Toolbox.

Published
2022
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25. Charting a global research strategy for progressive MS—An international progressive MS Alliance proposal

Author

Thompson, Alan J, primary, Carroll, William, additional, Ciccarelli, Olga, additional, Comi, Giancarlo, additional, Cross, Anne, additional, Donnelly, Alexis, additional, Feinstein, Anthony, additional, Fox, Robert J, additional, Helme, Anne, additional, Hohlfeld, Reinhard, additional, Hyde, Robert, additional, Kanellis, Pamela, additional, Landsman, Douglas, additional, Lubetzki, Catherine, additional, Marrie, Ruth Ann, additional, Morahan, Julia, additional, Montalban, Xavier, additional, Musch, Bruno, additional, Rawlings, Sarah, additional, Salvetti, Marco, additional, Sellebjerg, Finn, additional, Sincock, Caroline, additional, Smith, Kathryn E, additional, Strum, Jon, additional, Zaratin, Paola, additional, and Coetzee, Timothy, additional

Published
2021
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26. Collective health research assessment: Development of a tool to measure the impact of multi-stakeholder research initiatives

Author

Kork, Anna-Aurora, primary, Antonini, Carla, additional, García-Torea, Nicolás, additional, Luque-Vílchez, Mercedes, additional, Costa, Ericka, additional, Senn, Juliette, additional, Larrinaga, Carlos, additional, Bertorello, Deborah, additional, Brichetto, Giampaolo, additional, Zaratin, Paola, additional, and Andreaus, Michele, additional

Published
2021
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30. Charting a global research strategy for progressive MS-An international progressive MS Alliance proposal

Author

Thompson, Alan, Carroll, William, Ciccarelli, Olga, Comi, Giancarlo, Cross, Anne H., Donnelly, Alexis A., Feinstein, Anthony, Fox, Robert J, Helme, Anne, Hohlfeld, Reinhard, Hyde, Robert, Kanellis, Pamela, Landsman, Douglas, Lubetzki, Catherine, Marrie, Ruth Ann, Morahan, Julia, Montalban, Xavier, Musch, Bruno, Rawlings, Sarah, Salvetti, Marco, Sellebjerg, Finn, Sincock, Caroline, Smith, Kathryn E, Strum, Jon, Zaratin, Paola, Coetzee, Timothy, and Universitat Autònoma de Barcelona

Subjects
medicine.medical_specialty, Biomedical Research, progressive, Primary progressive, Multiple sclerosis, chemistry.chemical_compound, DOUBLE-BLIND, Physical medicine and rehabilitation, Progressive, MRI MEASURES, Humans, Medicine, NEUROFILAMENT LIGHT LEVELS, Progressive multiple sclerosis, Future Perspectives, OUTCOMES, PLACEBO, Progression, business.industry, DISABILITY, MULTIPLE-SCLEROSIS, NATURAL-HISTORY, Multiple Sclerosis, Chronic Progressive, medicine.disease, EFFICACY, progressive multiple sclerosis, Siponimod, Alliance, Neurology, chemistry, Research Design, Quality of Life, Ocrelizumab, progression, Neurology (clinical), business, MATTER, medicine.drug
Abstract

Background: Progressive forms of multiple sclerosis (MS) affect more than 1 million individuals globally. Recent approvals of ocrelizumab for primary progressive MS and siponimod for active secondary progressive MS have opened the therapeutic door, though results from early trials of neuroprotective agents have been mixed. The recent introduction of the term ‘active’ secondary progressive MS into the therapeutic lexicon has introduced potential confusion to disease description and thereby clinical management. Objective: This paper reviews recent progress, highlights continued knowledge and proposes, on behalf of the International Progressive MS Alliance, a global research strategy for progressive MS. Methods: Literature searches of PubMed between 2015 and May, 2021 were conducted using the search terms “progressive multiple sclerosis”, “primary progressive multiple sclerosis”, “secondary progressive MS”. Proposed strategies were developed through a series of in-person and virtual meetings of the International Progressive MS Alliance Scientific Steering Committee. Results: Sustaining and accelerating progress will require greater understanding of underlying mechanisms, identification of potential therapeutic targets, biomarker discovery and validation, and conduct of clinical trials with improved trial design. Encouraging developments in symptomatic and rehabilitative interventions are starting to address ongoing challenges experienced by people with progressive MS. Conclusion: We need to manage these challenges and realise the opportunities in the context of a global research strategy, which will improve quality of life for people with progressive MS.

Published
2021

34. Different disease modifying therapies can increase or decrease Covid-19 severity in Multiple Sclerosis (2021)

Author

Sormani, Maria Pia, primary, De Rossi, Nicola, additional, Schiavetti, Irene, additional, Carmisciano, Luca, additional, Cordioli, Cinzia, additional, Moiola, Lucia, additional, Radaelli, Marta, additional, Immovilli, Paolo, additional, Capobianco, Marco, additional, Trojano, Maria, additional, Zaratin, Paola, additional, Tedeschi, Gioacchino, additional, Comi, Giancarlo, additional, Battaglia, Mario Alberto, additional, Patti, Francesco, additional, and Salvetti, Marco, additional

Published
2021
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37. Predictors of clinically significant anxiety in people with multiple sclerosis: A one-year follow-up study

Author

Podda, Jessica, primary, Ponzio, Michela, additional, Messmer Uccelli, Michele, additional, Pedullà, Ludovico, additional, Bozzoli, Federico, additional, Molinari, Federica, additional, Monti Bragadin, Margherita, additional, Battaglia, Mario Alberto, additional, Zaratin, Paola, additional, Brichetto, Giampaolo, additional, and Tacchino, Andrea, additional

Published
2020
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38. Disease Modifying Therapies and COVID-19 Severity in Multiple Sclerosis

Author

Sormani, Maria Pia, primary, De Rossi, Nicola, additional, Schiavetti, Irene, additional, Carmisciano, Luca, additional, Cordioli, Cinzia, additional, Moiola, Lucia, additional, Radaelli, Marta, additional, Immovilli, Paolo, additional, Capobianco, Marco, additional, Trojano, Maria, additional, Zaratin, Paola, additional, Tedeschi, Gioacchino, additional, Comi, Giancarlo, additional, Battaglia, Mario Alberto, additional, Patti, Francesco, additional, and Salvetti, Marco, additional

Published
2020
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41. The Multiple Sclerosis Care Unit

Author

Sørensen, Per S, Giovannoni, Gavin, Montalban, Xavier, Thalheim, Christoph, Zaratin, Paola, Comi, Giancarlo, and Universitat Autònoma de Barcelona. Departament de Medicina

Subjects
Multiple Sclerosis, multiple sclerosis multidisciplinary management, Cost-Benefit Analysis, Disease, Unit (housing), Multiple sclerosis, 03 medical and health sciences, 0302 clinical medicine, Patient satisfaction, Quality of life (healthcare), Multidisciplinary approach, multiple sclerosis care, medicine, Humans, 030212 general & internal medicine, Topical Review, multiple sclerosis symptomatic treatment, multiple sclerosis treatment, business.industry, Custodial care, multiple sclerosis disease-modifying therapy, Disease Management, medicine.disease, Neurology, Quality of Life, Patient Care, Neurology (clinical), Medical emergency, Home help, business, Delivery of Health Care, 030217 neurology & neurosurgery
Abstract

Treatment of multiple sclerosis (MS) has become increasingly multifaceted and comprises not only a variety of disease-modifying drugs with different mechanism of action but also a wide range of symptomatic therapies. Today, it is not possible for the family physician or even many general neurologists to master the current treatment algorithm, and this calls for the establishment of multidisciplinary MS Care Units. The core of the MS Care Unit would, in addition to MS neurologists and nurses, typically comprise neuropsychologists, clinical psychologists, physiotherapists, occupational therapists and secretaries, and will work together with a group of different specialists on formalized diagnostic workup procedures, protocols for initiation and follow-up of disease-modifying therapies. It is obvious that the terms of performance of different MS Care Units will vary across regions and need to be balanced with clinical practice according to local conditions. Although the main objective for establishment of MS Care Units will be to offer the single MS patient seamless and correct management of the disease to increase patient satisfaction and quality of life, it may even be cost-effective for the society by maintaining the working ability and reducing the costs of home help and custodial care by keeping people with MS resourceful.

Published
2019

44. The Italian multiple sclerosis register

Author

Trojano, M, Bergamaschi, R, Amato, M, Comi, G, Ghezzi, A, Lepore, V, Marrosu, M, Mosconi, P, Patti, F, Ponzio, M, Zaratin, P, Battaglia, M, Acquistapace, D, Aguglia, U, Annunziata, P, Ardito, B, Avolio, C, Balgera, R, Bandini, F, Banfi, P, Barone, P, Bellantonio, P, Bertolotto, A, Bertora, P, Bombardi, R, Bosco Zimatore, G, Bossio, R, Bramanti, P, Brescia Morra, V, Brioschi, A, Bruzzone, M, Buccafusca, M, Busillo, V, Caneve, G, Caniatti, L, Capone, L, Capone, F, Cappellani, A, Cargnelutti, D, Cavaletti, G, Cavalla, P, Celani, M, Centonze, D, Chiveri, L, Clerici, R, Clerico, M, Cocco, E, Comi, C, Coniglio, M, Cordera, S, Corea, F, Cortese, A, Costantino, G, Cottone, S, Crociani, P, D’Andrea, F, Danni, M, De Luca, G, de Pascalis, D, De Robertis, F, De Stefano, N, Di Battista, G, Di Napoli, M, Falcini, M, Fausto, F, Ferrò, M, Florio, C, Fortunato, M, Frittelli, C, Galgani, S, Gallo, P, Gatto, M, Gazzola, P, Geda, C, Giordano, A, Granella, F, Grasso, M, Grimaldi, L, Imperiale, D, Lo Russo, L, Logullo, F, Lugaresi, A, Lus, G, Maccarrone, G, Maimone, D, Malagù, S, Marconi, R, Maritato, P, Massacesi, L, Mazzoni, M, Meucci, G, Mirabella, M, Montepietra, S, Nasuelli, D, Neri, W, Orefice, G, Parodi, S, Pasquali, L, Passarella, B, Peresson, M, Perla, F, Pesci, I, Piantadosi, C, Piras, M, Pizio, N, Pozzilli, C, Protti, A, Pugliatti, M, Quatrale, R, Ragno, M, Rezzonico, M, Ribizzi, G, Riva, M, Ronzoni, M, Rosso, M, Rottoli, M, Rovaris, M, Salemi, G, Salvetti, M, Santangelo, M, Santangelo, G, Santuccio, G, Sarchielli, P, Scarpini, E, Sechi, G, Severi, S, Sinisi, L, Sola, P, Spitaleri, D, Tassinari, T, Tedeschi, G, Tonietti, S, Torri Clerici, V, Totaro, R, Traccis, S, Turla, M, Uccelli, A, Ulivelli, M, Valentino, P, Valeriani, M, Venturi, S, Vianello, M, Zaffaroni, M, Trojano, Maria, Bergamaschi, Roberto, Amato, Maria Pia, Comi, Giancarlo, Ghezzi, Angelo, Lepore, Vito, Marrosu, Maria Giovanna, Mosconi, Paola, Patti, Francesco, Ponzio, Michela, Zaratin, Paola, Battaglia, Mario Alberto, Acquistapace, D., Aguglia, U., Amato, M. P., Annunziata, P., Ardito, B., Avolio, C., Balgera, R., Bandini, F., Banfi, P., Barone, P., Bellantonio, P., Bergamaschi, R., Bertolotto, A., Bertora, P., Bombardi, R., Bosco Zimatore, G., Bossio, R. B., Bramanti, P., Brescia Morra, V., Brioschi, A. M., Bruzzone, M., Buccafusca, M., Busillo, V., Caneve, G., Caniatti, L. M., Capone, L., Capone, F., Cappellani, A., Cargnelutti, D., Cavaletti, G., Cavalla, P., Celani, M. G., Centonze, D., Chiveri, L., Clerici, R., Clerico, M., Cocco, E., Comi, G., Comi, C., Coniglio, M. G., Cordera, S., Corea, F., Cortese, A., Costantino, G., Cottone, S., Crociani, P., D’Andrea, F., Danni, M. C., De Luca, G., de Pascalis, D., De Robertis, F., De Stefano, N., Di Battista, G., Di Napoli, M., Falcini, M., Fausto, F., Ferrò, M. T., Florio, C., Fortunato, M., Frittelli, C., Galgani, S., Gallo, P., Gatto, M., Gazzola, P., Geda, C., Giordano, A., Granella, F., Grasso, M. G., Grimaldi, L. M. E., Imperiale, D., Lo Russo, L., Logullo, F. O., Lugaresi, A., Lus, G., Maccarrone, G., Maimone, D., Malagù, S., Marconi, R., Maritato, P., Massacesi, L., Mazzoni, M., Meucci, G., Mirabella, M., Montepietra, S., Nasuelli, D., Neri, W., Orefice, G., Parodi, S., Pasquali, L., Passarella, B., Patti, F., Peresson, M., Perla, F., Pesci, I., Piantadosi, C., Piras, M. L., Pizio, N. R., Pozzilli, C., Protti, A., Pugliatti, M., Quatrale, R., Ragno, M., Rezzonico, M., Ribizzi, G., Riva, M., Ronzoni, M., Rosso, M. G., Rottoli, M., Rovaris, M., Salemi, G., Salvetti, M., Santangelo, M., Santangelo, G., Santuccio, G., Sarchielli, P., Scarpini, E., Sechi, G. P., Severi, S., Sinisi, L., Sola, P., Spitaleri, D., Tassinari, T., Tedeschi, G., Tonietti, S., Torri Clerici, V., Totaro, R., Traccis, S., Trojano, M., Turla, M., Uccelli, A., Ulivelli, M., Valentino, P., Valeriani, M., Venturi, S., Vianello, M., Zaffaroni, M., Trojano, M, Bergamaschi, R, Amato, M, Comi, G, Ghezzi, A, Lepore, V, Marrosu, M, Mosconi, P, Patti, F, Ponzio, M, Zaratin, P, Battaglia, M, Acquistapace, D, Aguglia, U, Annunziata, P, Ardito, B, Avolio, C, Balgera, R, Bandini, F, Banfi, P, Barone, P, Bellantonio, P, Bertolotto, A, Bertora, P, Bombardi, R, Bosco Zimatore, G, Bossio, R, Bramanti, P, Brescia Morra, V, Brioschi, A, Bruzzone, M, Buccafusca, M, Busillo, V, Caneve, G, Caniatti, L, Capone, L, Capone, F, Cappellani, A, Cargnelutti, D, Cavaletti, G, Cavalla, P, Celani, M, Centonze, D, Chiveri, L, Clerici, R, Clerico, M, Cocco, E, Comi, C, Coniglio, M, Cordera, S, Corea, F, Cortese, A, Costantino, G, Cottone, S, Crociani, P, D’Andrea, F, Danni, M, De Luca, G, de Pascalis, D, De Robertis, F, De Stefano, N, Di Battista, G, Di Napoli, M, Falcini, M, Fausto, F, Ferrò, M, Florio, C, Fortunato, M, Frittelli, C, Galgani, S, Gallo, P, Gatto, M, Gazzola, P, Geda, C, Giordano, A, Granella, F, Grasso, M, Grimaldi, L, Imperiale, D, Lo Russo, L, Logullo, F, Lugaresi, A, Lus, G, Maccarrone, G, Maimone, D, Malagù, S, Marconi, R, Maritato, P, Massacesi, L, Mazzoni, M, Meucci, G, Mirabella, M, Montepietra, S, Nasuelli, D, Neri, W, Orefice, G, Parodi, S, Pasquali, L, Passarella, B, Peresson, M, Perla, F, Pesci, I, Piantadosi, C, Piras, M, Pizio, N, Pozzilli, C, Protti, A, Pugliatti, M, Quatrale, R, Ragno, M, Rezzonico, M, Ribizzi, G, Riva, M, Ronzoni, M, Rosso, M, Rottoli, M, Rovaris, M, Salemi, G, Salvetti, M, Santangelo, M, Santangelo, G, Santuccio, G, Sarchielli, P, Scarpini, E, Sechi, G, Severi, S, Sinisi, L, Sola, P, Spitaleri, D, Tassinari, T, Tedeschi, G, Tonietti, S, Torri Clerici, V, Totaro, R, Traccis, S, Turla, M, Uccelli, A, Ulivelli, M, Valentino, P, Valeriani, M, Venturi, S, Vianello, M, Zaffaroni, M, Trojano, Maria, Bergamaschi, Roberto, Amato, Maria Pia, Comi, Giancarlo, Ghezzi, Angelo, Lepore, Vito, Marrosu, Maria Giovanna, Mosconi, Paola, Patti, Francesco, Ponzio, Michela, Zaratin, Paola, Battaglia, Mario Alberto, Acquistapace, D., Aguglia, U., Amato, M. P., Annunziata, P., Ardito, B., Avolio, C., Balgera, R., Bandini, F., Banfi, P., Barone, P., Bellantonio, P., Bergamaschi, R., Bertolotto, A., Bertora, P., Bombardi, R., Bosco Zimatore, G., Bossio, R. B., Bramanti, P., Brescia Morra, V., Brioschi, A. M., Bruzzone, M., Buccafusca, M., Busillo, V., Caneve, G., Caniatti, L. M., Capone, L., Capone, F., Cappellani, A., Cargnelutti, D., Cavaletti, G., Cavalla, P., Celani, M. G., Centonze, D., Chiveri, L., Clerici, R., Clerico, M., Cocco, E., Comi, G., Comi, C., Coniglio, M. G., Cordera, S., Corea, F., Cortese, A., Costantino, G., Cottone, S., Crociani, P., D’Andrea, F., Danni, M. C., De Luca, G., de Pascalis, D., De Robertis, F., De Stefano, N., Di Battista, G., Di Napoli, M., Falcini, M., Fausto, F., Ferrò, M. T., Florio, C., Fortunato, M., Frittelli, C., Galgani, S., Gallo, P., Gatto, M., Gazzola, P., Geda, C., Giordano, A., Granella, F., Grasso, M. G., Grimaldi, L. M. E., Imperiale, D., Lo Russo, L., Logullo, F. O., Lugaresi, A., Lus, G., Maccarrone, G., Maimone, D., Malagù, S., Marconi, R., Maritato, P., Massacesi, L., Mazzoni, M., Meucci, G., Mirabella, M., Montepietra, S., Nasuelli, D., Neri, W., Orefice, G., Parodi, S., Pasquali, L., Passarella, B., Patti, F., Peresson, M., Perla, F., Pesci, I., Piantadosi, C., Piras, M. L., Pizio, N. R., Pozzilli, C., Protti, A., Pugliatti, M., Quatrale, R., Ragno, M., Rezzonico, M., Ribizzi, G., Riva, M., Ronzoni, M., Rosso, M. G., Rottoli, M., Rovaris, M., Salemi, G., Salvetti, M., Santangelo, M., Santangelo, G., Santuccio, G., Sarchielli, P., Scarpini, E., Sechi, G. P., Severi, S., Sinisi, L., Sola, P., Spitaleri, D., Tassinari, T., Tedeschi, G., Tonietti, S., Torri Clerici, V., Totaro, R., Traccis, S., Trojano, M., Turla, M., Uccelli, A., Ulivelli, M., Valentino, P., Valeriani, M., Venturi, S., Vianello, M., and Zaffaroni, M.

Abstract

The past decade has seen extraordinary increase in worldwide availability of and access to several large multiple sclerosis (MS) databases and registries. MS registries represent powerful tools to provide meaningful information on the burden, natural history, and long-term safety and effectiveness of treatments. Moreover, patients, physicians, industry, and policy makers have an active interest in real-world observational studies based on register data, as they have the potential to answer the questions that are most relevant to daily treatment decision-making. In 2014, the Italian MS Foundation, in collaboration with the Italian MS clinical centers, promoted and funded the creation of the Italian MS Register, a project in continuity with the existing Italian MS Database Network set up from 2001. Main objective of the Italian MS Register is to create an organized multicenter structure to collect data of all MS patients for better defining the disease epidemiology, improving quality of care, and promoting research projects in high-priority areas. The aim of this article is to present the current framework and network of the Italian MS register, including the methodology used to improve the quality of data collection and to facilitate the exchange of data and the collaboration among national and international groups.

Published
2019

45. The Multiple Sclerosis Care Unit

Author

Soelberg Sorensen, Per, Giovannoni, Gavin, Montalban, Xavier, Thalheim, Christoph, Zaratin, Paola, Comi, Giancarlo, Soelberg Sorensen, Per, Giovannoni, Gavin, Montalban, Xavier, Thalheim, Christoph, Zaratin, Paola, and Comi, Giancarlo

Abstract

Treatment of multiple sclerosis (MS) has become increasingly multifaceted and comprises not only a variety of disease-modifying drugs with different mechanism of action but also a wide range of symptomatic therapies. Today, it is not possible for the family physician or even many general neurologists to master the current treatment algorithm, and this calls for the establishment of multidisciplinary MS Care Units. The core of the MS Care Unit would, in addition to MS neurologists and nurses, typically comprise neuropsychologists, clinical psychologists, physiotherapists, occupational therapists and secretaries, and will work together with a group of different specialists on formalized diagnostic workup procedures, protocols for initiation and follow-up of disease-modifying therapies. It is obvious that the terms of performance of different MS Care Units will vary across regions and need to be balanced with clinical practice according to local conditions. Although the main objective for establishment of MS Care Units will be to offer the single MS patient seamless and correct management of the disease to increase patient satisfaction and quality of life, it may even be cost-effective for the society by maintaining the working ability and reducing the costs of home help and custodial care by keeping people with MS resourceful.

Published
2019

46. Impact of the COVID-19 pandemic on persons with multiple sclerosis: Early findings from a survey on disruptions in care and self-reported outcomes.

Author

Manacorda, Tommaso, Bandiera, Paolo, Terzuoli, Federica, Ponzio, Michela, Brichetto, Giampaolo, Zaratin, Paola, Bezzini, Daiana, and Battaglia, Mario A

Subjects
SELF-evaluation, CROSS-sectional method, MULTIPLE sclerosis, SURVEYS, COVID-19 pandemic, WELL-being
Abstract

Objective: To describe the disruptions in care experienced by persons with Multiple Sclerosis in Italy due to the COVID-19 pandemic and the self-reported impact on their health and wellbeing. Methods: A cross-sectional online survey was completed by 2722 persons with Multiple Sclerosis, after Italy instituted a national lockdown in response to the pandemic. Results: Persons with Multiple Sclerosis reported that the pandemic caused broad disruptions to usual health and social care services, which impacted on their health and wellbeing. Disruptions in care were consistently associated with negative self-reported impacts on the expected progression of the disease, on out-of-pocket expenditure and on carer's stress. Psychological consequences were associated with interruption to usual psychological support, and concerns about the safety of care delivered in person. Conclusions: The quality of life of persons with Multiple Sclerosis depends greatly on prompt access to a broad range of health and care services. Negative psychological impacts reported by persons with Multiple Sclerosis with less severe disabilities show that accessible integrated services are crucial for maintenance of their wellbeing. Most persons with Multiple Sclerosis with more severe disability experienced negative impacts on perceived health. Their carers compensating for lack of social input resulted in care overburden. As continuity of care is crucial for persons with Multiple Sclerosis, as well as for persons with chronic conditions in general, strategies must be in place to ensure it is included in future pandemic response plans. [ABSTRACT FROM AUTHOR]

Published
2021
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49. Characterization of protein tyrosine phosphatase H1 knockout mice in animal models of local and systemic inflammation

Author

Muzio Valeria, Lafont David T, Patrignani Claudia, Gréco Béatrice, van Huijsduijnen Rob, and Zaratin Paola F

Subjects
Therapeutics. Pharmacology, RM1-950
Abstract

Abstract Background PTPH1 is a protein tyrosine phosphatase expressed in T cells but its effect on immune response is still controversial. PTPH1 dephosphorylates TCRzeta in vitro, inhibiting the downstream inflammatory signaling pathway, however no immunological phenotype has been detected in primary T cells derived from PTPH1-KO mice. The aim of the present study is to characterize PTPH1 phenotype in two in vivo inflammatory models and to give insights in possible PTPH1 functions in cytokine release. Methods We challenged PTPH1-KO mice with two potent immunomodulatory molecules, carrageenan and LPS, in order to determine PTPH1 possible role in inflammatory response in vivo. Cytokine release, inflammatory pain and gene expression were investigated in challenged PTPH1-WT and KO mice. Results The present study shows that carrageenan induces a trend of slightly increased spontaneous pain sensitivity in PTPH1-KO mice compared to WT (wild-type) littermates, but no differences in cytokine release, induced pain perception and cellular infiltration have been detected between the two genotypes in this mouse model. On the other hand, LPS-induced TNFα, MCP-1 and IL10 release was significantly reduced in PTPH1-KO plasma compared to WTs 30 and 60 minutes post challenge. No cytokine release modulation was detectable 180 minutes post LPS challenge. Conclusion In conclusion, the present study points out a slight potential role for PTPH1 in spontaneous pain sensitivity and it indicates that this phosphatase might play a role in the positive regulation of the LPS-induced cytokines release in vivo, in contrast to previous reports indicating PTPH1 as potential negative regulator of immune response.

Published
2010
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50. Knockout mice reveal a role for protein tyrosine phosphatase H1 in cognition

Author

Ardizzone Michele, Tavano Patrizia, Magnone Maria, Patrignani Claudia, Muzio Valeria, Gréco Béatrice, and Zaratin Paola F

Subjects
Neurology. Diseases of the nervous system, RC346-429
Abstract

Abstract Background The present study has investigated the protein tyrosine phosphatase H1 (PTPH1) expression pattern in mouse brain and its impact on CNS functions. Methods We have previously described a PTPH1-KO mouse, generated by replacing the PTP catalytic and the PDZ domain with a LacZ neomycin cassette. PTPH1 expression pattern was evaluated by LacZ staining in the brain and PTPH1-KO and WT mice (n = 10 per gender per genotype) were also behaviorally tested for CNS functions. Results In CNS, PTPH1 is expressed during development and in adulthood and mainly localized in hippocampus, thalamus, cortex and cerebellum neurons. The behavioral tests performed on the PTPH1-KO mice showed an impact on working memory in male mice and an impaired learning performance at rotarod in females. Conclusion These results demonstrate for the first time a neuronal expression of PTPH1 and its functionality at the level of cognition.

Published
2008
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