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3. Hypomagnesaemia with varying degrees of extrarenal symptoms as a consequence of heterozygous CNNM2 variants

Author

Bosman, Willem, Franken, Gijs A. C., de las Heras, Javier, Madariaga, Leire, Barakat, Tahsin Stefan, Oostenbrink, Rianne, van Slegtenhorst, Marjon, Perdomo-Ramírez, Ana, Claverie-Martín, Félix, van Eerde, Albertien M., Vargas-Poussou, Rosa, Dubourg, Laurence Derain, González-Recio, Irene, Martínez-Cruz, Luis Alfonso, de Baaij, Jeroen H. F., and Hoenderop, Joost G. J.

Published
2024
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5. Types of diagnostic errors reported by paediatric emergency providers in a global paediatric emergency care research network

Author

Mahajan, Prashant, Grubenhoff, Joseph A, Cranford, Jim, Bhatt, Maala, Chamberlain, James M, Chang, Todd, Lyttle, Mark, Oostenbrink, Rianne, Roland, Damian, Rudy, Richard M, Shaw, Kathy N, Zuniga, Robert Velasco, Belle, Apoorva, Kuppermann, Nathan, and Singh, Hardeep

Subjects
Health Services and Systems, Health Sciences, Prevention, Emergency Care, Pain Research, Clinical Research, Humans, Child, Female, Adult, Male, Diagnostic Errors, Emergency Service, Hospital, Patient Discharge, Missed Diagnosis, Physical Examination, emergency department, paediatrics, diagnostic errors, Health services and systems, Public health
Abstract

BackgroundDiagnostic errors, reframed as missed opportunities for improving diagnosis (MOIDs), are poorly understood in the paediatric emergency department (ED) setting. We investigated the clinical experience, harm and contributing factors related to MOIDs reported by physicians working in paediatric EDs.MethodsWe developed a web-based survey in which physicians participating in the international Paediatric Emergency Research Network representing five out of six WHO regions, described examples of MOIDs involving their own or a colleague's patients. Respondents provided case summaries and answered questions regarding harm and factors contributing to the event.ResultsOf 1594 physicians surveyed, 412 (25.8%) responded (mean age=43 years (SD=9.2), 42.0% female, mean years in practice=12 (SD=9.0)). Patient presentations involving MOIDs had common undifferentiated symptoms at initial presentation, including abdominal pain (21.1%), fever (17.2%) and vomiting (16.5%). Patients were discharged from the ED with commonly reported diagnoses, including acute gastroenteritis (16.7%), viral syndrome (10.2%) and constipation (7.0%). Most reported MOIDs (65%) were detected on ED return visits (46% within 24 hours and 76% within 72 hours). The most common reported MOID was appendicitis (11.4%), followed by brain tumour (4.4%), meningitis (4.4%) and non-accidental trauma (4.1%). More than half (59.1%) of the reported MOIDs involved the patient/parent-provider encounter (eg, misinterpreted/ignored history or an incomplete/inadequate physical examination). Types of MOIDs and contributing factors did not differ significantly between countries. More than half of patients had either moderate (48.7%) or major (10%) harm due to the MOID.ConclusionsAn international cohort of paediatric ED physicians reported several MOIDs, often in children who presented to the ED with common undifferentiated symptoms. Many of these were related to patient/parent-provider interaction factors such as suboptimal history and physical examination. Physicians' personal experiences offer an underexplored source for investigating and mitigating diagnostic errors in the paediatric ED.

Published
2023

7. Serum proteomics reveals hemophagocytic lymphohistiocytosis-like phenotype in a subset of patients with multisystem inflammatory syndrome in children

Author

Tulling, Adam J., Holierhoek, Marloes G., Jansen-Hoogendijk, Anja M., Hoste, Levi, Haerynck, Filomeen, Tavernier, Simon J., Oostenbrink, Rianne, Buysse, Corinne M.P., Bannier, Michiel A.G.E., Bekhof, Jolita, Breukels, Mijke, Hammer, Sanne C., Jacobs, Monique A.M., Kamps, Arvid W.A., van der Linden, Jan W., Lebon, Ankie, Oudshoorn, Johanna H., Tramper-Stranders, Gerdien A., Vastert, Sebastiaan J., Wieringa, Jantien W., Terheggen-Lagro, Suzanne W.J., Wildenbeest, Joanne G., von Asmuth, Erik G.J., van den Akker, Erik B., van Gijn, Marielle E., Lugthart, Gertjan, and Buddingh, Emilie P.

Published
2024
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8. Current state-of-the-art and gaps in platform trials: 10 things you should know, insights from EU-PEARL

Author

Sánchez-Montalva, Adrian, Estevez, Ana Belén, Sánchez, Àlex, Sanjuan, Anna, Sena, Elena, Granados, Emma, Arévalo de Andrés, Esther, Nuñez, Fátima, Arteaga, Gara, Fuentes Ruiz, Gabriela Perez, Fernández, Guillermo, Rivera-Esteban, Jesus, Comella, Joan, Ramos-Quiroga, Josep Antoni, Genescà, Joan, Espinosa, Juan, Pericàs, Juan Manuel, Murcia, Lada, Cash-Gibson, Lucinda, de Valles Silvosa, Maria, Barroso de Sousa, María Fernanda, Sánchez-Maroto Carrizo, Olga, Ibañez-Jiménez, Pol, Augustin, Salvador, Perez-Hoyos, Santiago, Rodríguez-Navarro, Sarai, Muñoz-Martínez, Sergio, Serres, Silvia, Kalko, Susana, Michon, Amelie, Ussi, Anton, Lydall, Ben, van de Ketterij, Edwin, Quiles, Ignacio, Carapina, Tamara, Kumaus, Constantin, Ramazanova, Dariga, Meyer, Elias Laurin, Koenig, Franz, Roig, Marta Bofill, Brunner, Martin, Posch, Martin, Krotka, Pavla, Zehetmayer, Sonja, Carton, Charlotte, Legius, Eric, Begum, Amina, Pariante, Carmine, Worrell, Courtney, Lombardo, Giulia, Sforzini, Luca, Brown, Mollie, Gullet, Nancy, Amasi-Hartoonian, Nare, Ferner, Rosalie, Kose, Melisa, Spitaleri, Andrea, Ghodousi, Arash, Di Serio, Clelia, Cirillo, Daniela, Cugnata, Federica, Saluzzo, Francesca, Benedetti, Francesco, Scarale, Maria Giovanna, Zini, Michela, Rancoita, Paola Maria, Alagna, Riccardo, Poletti, Sara, Dhaenens, Britt, Van Der Lei, Johan, de Steenwinkel, Jurriaan, Moinat, Maxim, Oostenbrink, Rianne, Hoogendijk, Witte, Hölscher, Michael, Heinrich, Norbert, Otte, Christian, Potratz, Cornelia, Zocholl, Dario, Kulakova, Eugenia, Tacke, Frank, Brasanac, Jelena, Leubner, Jonas, Krajewska, Maja, Freitag, Michaela Maria, Gold, Stefan, Zoller, Thomas, Chae, Woo Ri, Daniel, Christel, Kara, Leila, Vaterkowski, Morgan, Griffon, Nicolas, Wolkenstein, Pierre, Pais, Raluca, Ratziu, Vlad, Voets, David, Maes, Christophe, Kalra, Dipak, Thienpoint, Geert, Deckerck, Jens, Lea, Nathan, Singleton, Peter, Viele, Kert, Jacko, Peter, Berry, Scott, Parke, Tom, Aydin, Burç, Kubiak, Christine, Demotes, Jacques, Ueda, Keiko, Matei, Mihaela, Contrino, Sergio, Röhl, Claas, Cordero, Estefania, Greenhalgh, Fiona, Jarke, Hannes, Angelova, Juliana, Boudes, Mathieu, Dressler, Stephan, Strammiello, Valentina, Anstee, Quentin, Gutierrez-Ibarluzea, Iñaki, Otte, Maximilian, Heimbach, Natalie, Hofner, Benjamin, Burgwinkel, Cora, Kaestel, Hue, Hees, Katharina, Nguyen, Quynh, Prieto-Alhambra, Daniel, Tan, Eng Hooi (Cheryl), Raviglione, Mario, de Colombani, Pierpaolo, Villa, Simone, Maron, Eduard, Evans, Gareth, Savitz, Adam J., Van Dessel, Ann, Duca, Anna, Kaminski, Anne, Wouters, Bie, Porter, Brandon, Charron, Catherine, Spiertz, Cecile, Zizzamia, Christopher, Millar, Daniel, Hasselbaink, Danny, Orr, David, Kesters, Divya, Hubin, Ellen, Davies, Emma, Didden, Eva-Maria, Guz, Gabriela, Verstraete, Evelyn, Mao, Gary, Capuano, George, Martynowicz, Heddie, De Smedt, Heidi, Larsson, Ingela, Bruegelmans, Ines, Coste, Isabelle, Gonzalez Moreno, Jesus Maria, Niewczas, Julia, Xu, Jiajun, Rombouts, Karin, Woo, Katherine, Wuyts, Kathleen, Hersh, Kathryn, Oldenburg, Khrista, Zhang, Lingjiao, Schmidt, Mark, Szuch, Mark, Todorovic, Marija, Mangelaars, Maartje, Grewal, Melissa, Sandor, Molli, Di Prospero, Nick, Van Houten, Pamela, Minnick, Pansy, Bastos, Polyana, Patrizi, Robert, Morello, Salvatore, De Wilde, Severijn, Sun, Tao, Kline, Timothy, de Marez, Tine, Mielke, Tobias, Reijns, Tom, Popova, Vanina, Flossbach, Yanina, Tymofyeyev, Yevgen, De Groote, Zeger, Sverdlov, Alex, Bobirca, Alexandra, Krause, Annekatrin, Bobrica, Catalin, Heintz, Daniela, Magirr, Dominic, Glimm, Ekkehard, Baffert, Fabienne, Castiglione, Federica, Caruso, Franca, Patalano, Francesco, Bretz, Frank, Heimann, Guenter, Carbarns, Ian, Rodríguez, Ignacio, Ratescu, Ioana, Hampson, Lisa, Pedrosa, Marcos, Hark, Mareile, Mesenbrink, Peter, Penna, Sabina Hernandez, Bergues-Lang, Sarah, Baltes-Engler, Susanne, Arsiwala, Tasneem, Mondragon, Valeria Jordan, Guo, Hua, Da Costa, Jose Leite, Burman, Carl-Fredrik, Kirk, George, Aaes-Jørgensen, Anders, Dirach, Jorgen, Kjær, Mette Skalshøi, Martin, Alexandra, Hristov, Diyan, Rousseaux, Florent, Hittel, Norbert, Dornheim, Robert, Evans, Daniel, Sykes, Nick, Couvert, Camille, Leuven, Catherine, Notelet, Loïc, Gidh-Jain, Madhavi, Jouannin, Mathieu, Ammour, Nadir, Pierre, Suzanne, Haufe, Volker, Dong, Yingwen, Dubanchet, Catherine, de Préville, Nathalie, Baltauss, Tania, Jian, Zhu, Shnider, Sara, Bar-El, Tal, Bakker, Annette, Nievo, Marco, Iloeje, Uche, Conradie, Almari, Auffarrth, Ece, Lombard, Leandra, Benhayoun, Majda, Olugbosi, Morounfolu, Seidel, Stephanie S., Gumí, Berta, Guzmán, Claudia García, Molero, Eva, Pairó, Gisela, Machin, Núria, Cardelús, Raimon, Ramasastry, Saira, Pelzer, Saskia, Kremer, Andreas, Lindfors, Erno, Lynch, Chris, Spiertz, Cécile, Machín, Núria, and Pericàs, Juan M.

Published
2024
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9. The Pediatric Emergency Research Network

Author

Klassen, Terry, Dalziel, Stuart R, Babl, Franz E, Benito, Javier, Bressan, Silvia, Chamberlain, James, Chang, Todd P, Freedman, Stephen B, Kohn-Loncarica, Guillermo, Lyttle, Mark D, Mintegi, Santiago, Mistry, Rakesh D, Nigrovic, Lise E, Oostenbrink, Rianne, Plint, Amy C, Rino, Pedro, Roland, Damian, Van De Mosselaer, Gregory, and Kuppermann, Nathan

Subjects
Clinical Trials and Supportive Activities, Clinical Research, Pediatric, Infectious Diseases, Generic health relevance, Child, Emergency Medical Services, Emergency Medicine, Health Promotion, Health Services Research, Humans, International Cooperation, Pediatrics, multicenter randomized controlled trials, implementation, health care disparities, health equity, Paediatrics and Reproductive Medicine, Emergency & Critical Care Medicine
Abstract

ObjectivesThe Pediatric Emergency Research Network (PERN) was launched in 2009 with the intent for existing national and regional research networks in pediatric emergency care to organize globally for the conduct of collaborative research across networks.MethodsThe Pediatric Emergency Research Network has grown from 5- to 8-member networks over the past decade. With an executive committee comprising representatives from all member networks, PERN plays a supportive and collaborative rather than governing role. The full impact of PERN's facilitation of international collaborative research, although somewhat difficult to quantify empirically, can be measured indirectly by the observed growth of the field, the nature of the increasingly challenging research questions now being addressed, and the collective capacity to generate and implement new knowledge in treating acutely ill and injured children.ResultsBeginning as a pandemic response with a high-quality retrospective case-controlled study of H1N1 influenza risk factors, PERN research has progressed to multiple observational studies and ongoing global randomized controlled trials. As a recent example, PERN has developed sufficient network infrastructure to enable the rapid initiation of a prospective observational study in response to the current coronavirus disease 2019 pandemic. In light of the ongoing need for translation of research knowledge into equitable clinical practice and to promote health equity, PERN is committed to a coordinated international effort to increase the uptake of evidence-based management of common and treatable acute conditions in all emergency department settings.ConclusionsThe Pediatric Emergency Research Network's successes with global research, measured by prospective observational and interventional studies, mean that the network can now move to improve its ability to promote the implementation of scientific advances into everyday clinical practice. Achieving this goal will involve focus in 4 areas: (1) expanding the capacity for global randomized controlled trials; (2) deepening the focus on implementation science; (3) increasing attention to healthcare disparities and their origins, with growing momentum toward equity; and (4) expanding PERN's global reach through addition of sites and networks from resource-restricted regions. Through these actions, PERN will be able to build on successes to face the challenges ahead and meet the needs of acutely ill and injured children throughout the world.

Published
2021

12. Severe Pediatric COVID-19 and Multisystem Inflammatory Syndrome in Children From Wild-type to Population Immunity: A Prospective Multicenter Cohort Study With Real-time Reporting

Author

Tulling, Adam J., Lugthart, Gertjan, Mooij, Miriam G., Brackel, Caroline L. H., Terheggen-Lagro, Suzanne W. J., Oostenbrink, Rianne, Buysse, Corinne M. P., Hashimoto, Simone, Armbrust, Wineke, Bannier, Michiel A. G. E., Bekhof, Jolita, van Gameren-Oosterom, Helma B., Hendriks, Han, van Houten, Marlies A., van der Linden, Jan W., Lebon, Ankie, van Onzenoort-Bokken, Lonneke, Tramper-Stranders, Gerdien A., van Veen, Mirjam, von Asmuth, Erik G. J., Buddingh, Emilie P., van der Aa, Leontien B., van Aerde, Koen J., Auffarth-Smedema, Bettina, Bart, Ingeborg Y., Beek, Cherise, Bechan, Gitanjali I., van den Berg, J. Merlijn, Boonstra, Venje H., Breukels, Mijke, Brinkman, Danielle M.C., Bruijning-Verhagen, Patricia C.J.L., de Crom, Stephanie C., Ernst-Kruis, Margot R., Fraaij, Pieter L.A., Goris, Joyce, Groeneweg, Michael, Gruppen, Mariken, Hammer, Sanne C., Hissink Muller, Petra C.E., Homan-van der Veen, Jenneke, Jacobs, Monique A.M., Kamps, Arvid W.A., Ketharanathan, Naomi, van der Kuip, Martijn, Kuijpers, Taco W., Legger, Elizabeth G., Lo-A-Njoe, Shirley, Manshande, Meindert E., Miedema, Carien J., Obihara, Charlie C., Olivieira, Gideon O., Oudshoorn, Annemarie, Peeters, Esther J.E., Petru, Ronald, Pijnenburg, Marielle W.H., Rook, Denise, Schilleman, Kim, Schopmeijer, Rian, Slotboom, David, van der Steen, Manouk, Stol, Kim, Thomasse, Yolande E.M., Tissing, Wim J.E., van den Tweel, Xandra W., Vastert, Sebastiaan J., Verbeek, Anne B., Vernooij-van Langen, Annette M.M., Wieringa, Jantien W., Wildenbeest, Joanne G., de Wildt, Saskia N., and van Woerden, Christiaan

Published
2023
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13. ERN GENTURIS tumour surveillance guidelines for individuals with neurofibromatosis type 1

Author

Brunet, Joan, Van Calenbergh, Frank, Cassiman, Catherine, Czech, Thomas, Gavarrete de León, María José, Giele, Henk, Henley, Susie, Lazaro, Conxi, Lipkovskaya, Vera, Maher, Eamonn R., Martin, Vanessa, Mathijssen, Irene, Opocher, Enrico, Pires, Ana Elisabete, Pletschko, Thomas, Poupaki, Eirene, Ridola, Vita, Rietman, Andre, Rosenbaum, Thorsten, Santhouse, Alastair, Sehested, Astrid, Simmons, Ian, Taal, Walter, Wagner, Anja, Carton, Charlotte, Evans, D. Gareth, Blanco, Ignacio, Friedrich, Reinhard E., Ferner, Rosalie E., Farschtschi, Said, Salvador, Hector, Azizi, Amedeo A., Mautner, Victor, Röhl, Claas, Peltonen, Sirkku, Stivaros, Stavros, Legius, Eric, and Oostenbrink, Rianne

Published
2023
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14. Expanding the clinical phenotype of individuals with a 3-bp in-frame deletion of the NF1 gene (c.2970_2972del): an update of genotype-phenotype correlation.

Author

Koczkowska, Magdalena, Callens, Tom, Gomes, Alicia, Sharp, Angela, Chen, Yunjia, Hicks, Alesha D, Aylsworth, Arthur S, Azizi, Amedeo A, Basel, Donald G, Bellus, Gary, Bird, Lynne M, Blazo, Maria A, Burke, Leah W, Cannon, Ashley, Collins, Felicity, DeFilippo, Colette, Denayer, Ellen, Digilio, Maria C, Dills, Shelley K, Dosa, Laura, Greenwood, Robert S, Griffis, Cristin, Gupta, Punita, Hachen, Rachel K, Hernández-Chico, Concepción, Janssens, Sandra, Jones, Kristi J, Jordan, Justin T, Kannu, Peter, Korf, Bruce R, Lewis, Andrea M, Listernick, Robert H, Lonardo, Fortunato, Mahoney, Maurice J, Ojeda, Mayra Martinez, McDonald, Marie T, McDougall, Carey, Mendelsohn, Nancy, Miller, David T, Mori, Mari, Oostenbrink, Rianne, Perreault, Sebastién, Pierpont, Mary Ella, Piscopo, Carmelo, Pond, Dinel A, Randolph, Linda M, Rauen, Katherine A, Rednam, Surya, Rutledge, S Lane, Saletti, Veronica, Schaefer, G Bradley, Schorry, Elizabeth K, Scott, Daryl A, Shugar, Andrea, Siqveland, Elizabeth, Starr, Lois J, Syed, Ashraf, Trapane, Pamela L, Ullrich, Nicole J, Wakefield, Emily G, Walsh, Laurence E, Wangler, Michael F, Zackai, Elaine, Claes, Kathleen BM, Wimmer, Katharina, van Minkelen, Rick, De Luca, Alessandro, Martin, Yolanda, Legius, Eric, and Messiaen, Ludwine M

Subjects
Humans, Neurofibroma, Plexiform, Neurofibromatosis 1, Genetic Predisposition to Disease, Neurofibromin 1, Sequence Deletion, Heterozygote, Mutation, Missense, Adolescent, Adult, Child, Child, Preschool, Infant, Female, Male, Young Adult, Genetic Association Studies, Learning Disabilities, NF1, genotype–phenotype correlation, learning difficulties, neurofibroma, p.Met992del, genotype-phenotype correlation, Neurofibroma, Plexiform, Mutation, Missense, Preschool, Genetics, Clinical Sciences, Genetics & Heredity
Abstract

PurposeNeurofibromatosis type 1 (NF1) is characterized by a highly variable clinical presentation, but almost all NF1-affected adults present with cutaneous and/or subcutaneous neurofibromas. Exceptions are individuals heterozygous for the NF1 in-frame deletion, c.2970_2972del (p.Met992del), associated with a mild phenotype without any externally visible tumors.MethodsA total of 135 individuals from 103 unrelated families, all carrying the constitutional NF1 p.Met992del pathogenic variant and clinically assessed using the same standardized phenotypic checklist form, were included in this study.ResultsNone of the individuals had externally visible plexiform or histopathologically confirmed cutaneous or subcutaneous neurofibromas. We did not identify any complications, such as symptomatic optic pathway gliomas (OPGs) or symptomatic spinal neurofibromas; however, 4.8% of individuals had nonoptic brain tumors, mostly low-grade and asymptomatic, and 38.8% had cognitive impairment/learning disabilities. In an individual with the NF1 constitutional c.2970_2972del and three astrocytomas, we provided proof that all were NF1-associated tumors given loss of heterozygosity at three intragenic NF1 microsatellite markers and c.2970_2972del.ConclusionWe demonstrate that individuals with the NF1 p.Met992del pathogenic variant have a mild NF1 phenotype lacking clinically suspected plexiform, cutaneous, or subcutaneous neurofibromas. However, learning difficulties are clearly part of the phenotypic presentation in these individuals and will require specialized care.

Published
2019

15. Correction: Expanding the clinical phenotype of individuals with a 3-bp in-frame deletion of the NF1 gene (c.2970_2972del): an update of genotype-phenotype correlation.

Author

Koczkowska, Magdalena, Callens, Tom, Gomes, Alicia, Sharp, Angela, Chen, Yunjia, Hicks, Alesha, Aylsworth, Arthur, Azizi, Amedeo, Basel, Donald, Bellus, Gary, Bird, Lynne, Blazo, Maria, Burke, Leah, Cannon, Ashley, Collins, Felicity, DeFilippo, Colette, Denayer, Ellen, Digilio, Maria, Dills, Shelley, Dosa, Laura, Greenwood, Robert, Griffis, Cristin, Gupta, Punita, Hachen, Rachel, Hernández-Chico, Concepción, Janssens, Sandra, Jones, Kristi, Jordan, Justin, Kannu, Peter, Korf, Bruce, Lewis, Andrea, Listernick, Robert, Lonardo, Fortunato, Mahoney, Maurice, Ojeda, Mayra, McDonald, Marie, McDougall, Carey, Mendelsohn, Nancy, Miller, David, Mori, Mari, Oostenbrink, Rianne, Perreault, Sebastién, Pierpont, Mary, Piscopo, Carmelo, Pond, Dinel, Randolph, Linda, Rauen, Katherine, Rednam, Surya, Rutledge, S, Saletti, Veronica, Schaefer, G, Schorry, Elizabeth, Scott, Daryl, Shugar, Andrea, Siqveland, Elizabeth, Starr, Lois, Syed, Ashraf, Trapane, Pamela, Ullrich, Nicole, Wakefield, Emily, Walsh, Laurence, Wangler, Michael, Zackai, Elaine, Claes, Kathleen, Wimmer, Katharina, van Minkelen, Rick, De Luca, Alessandro, Martin, Yolanda, Legius, Eric, and Messiaen, Ludwine

Abstract

A correction has been published to this Article. The PDF and HTML have been updated accordingly.

Published
2019

16. Updated diagnostic criteria and nomenclature for neurofibromatosis type 2 and schwannomatosis: An international consensus recommendation

Author

Anten, Monique, Aylsworth, Arthur, Baralle, Diana, Barbarot, Sebastien, Barker, Fred, II, Ben-Shachar, Shay, Bergner, Amanda, Bessis, Didier, Blanco, Ignacio, Cassiman, Catherine, Ciavarelli, Patricia, Clementi, Maurizio, Frébourg, Thierry, Gomes, Alicia, Halliday, Dorothy, Helen Hanson Arvid Heiberg, Chris Hammond, Joly, Pascal, Jordan, Justin T., Karajannis, Matthias, Kroshinsky, Daniela, Larralde, Margarita, Lázaro, Conxi, Le, Lu, Link, Michael, Listernick, Robert, Mallucci, Conor, Merker, Vanessa L., Moertel, Christopher, Mueller, Amy, Ngeow, Joanne, Oostenbrink, Rianne, Packer, Roger, Parry, Allyson, Peltonen, Juha, Pichard, Dominique, Poppe, Bruce, Rezende, Nilton, Rodrigues, Luiz Oswaldo, Rosser, Tena, Ruggieri, Martino, Serra, Eduard, Steinke-Lange, Verena, Stivaros, Stavros Michael, Taylor, Amy, Toelen, Jaan, Tonsgard, James, Trevisson, Eva, Upadhyaya, Meena, Varan, Ali, Wilson, Meredith, Wu, Hao, Zadeh, Gelareh, Plotkin, Scott R., Messiaen, Ludwine, Legius, Eric, Pancza, Patrice, Avery, Robert A., Blakeley, Jaishri O., Babovic-Vuksanovic, Dusica, Ferner, Rosalie, Fisher, Michael J., Friedman, Jan M., Giovannini, Marco, Gutmann, David H., Hanemann, Clemens Oliver, Kalamarides, Michel, Kehrer-Sawatzki, Hildegard, Korf, Bruce R., Mautner, Victor-Felix, MacCollin, Mia, Papi, Laura, Rauen, Katherine A., Riccardi, Vincent, Schorry, Elizabeth, Smith, Miriam J., Stemmer-Rachamimov, Anat, Stevenson, David A., Ullrich, Nicole J., Viskochil, David, Wimmer, Katharina, Yohay, Kaleb, Huson, Susan M., Wolkenstein, Pierre, and Evans, D. Gareth

Published
2022
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18. Identification of the Determinants of Plexiform Neurofibroma Morbidity in Pediatric and Young Adult Neurofibromatosis Type 1 Patients: A Pilot Multivariate Approach.

Author

de Brons, Biagio, Dhaenens, Britt, van Minkelen, Rick, and Oostenbrink, Rianne

Subjects
RISK assessment, NEUROFIBROMA, PILOT projects, LOGISTIC regression analysis, NEUROFIBROMATOSIS 1, SYMPTOMS, RETROSPECTIVE studies, MULTIVARIATE analysis, DISEASES, PEDIATRICS, LONGITUDINAL method, MEDICAL records, ACQUISITION of data, DISEASE progression, PROPORTIONAL hazards models, DISEASE risk factors, DISEASE complications, ADULTS
Abstract

Simple Summary: We studied a group of 90 patients with NF1-related plexiform neurofibromas (PNs) with an average age of 15.7 years and a follow-up period of 9.8 yrs. PNs in patients with older age and PNs located in the craniofacial region or trunk were most frequently associated with plexiform neurofibroma morbidity and most frequently underwent intervention (surgery or systemic treatment). These findings may contribute to decisions on whether or not to start what treatment in NF1 patients with PNs. Background: Plexiform neurofibromas (PNs) are histologically benign peripheral nerve sheath tumors associated with neurofibromatosis type 1 (NF1) and often lead to significant morbidity due to growth. Management includes watchful waiting, surgery for partial debulking, and, since recently, systemic treatment with MEK inhibitors. However, due to the scarcity of natural history studies, our understanding of the natural progression of PNs to guide clinicians in deciding in whom and when to intervene is scarce. This study aims to describe the characteristics of NF1 patients with PNs and compare those at high risk for PN progression or experiencing significant morbidity from PN (complex PN) with NF1 patients with PNs of lower complexity. Methods: In this retrospective cohort study using clinical data from hospital records of NF1 patients with PNs seen at the Sophia Children's Hospital in the Netherlands between 2012 and 2023, we assessed determinants of clinical phenotypes and PN characteristics predictive of outcomes, including PN complexity and the timing of intervention for PN. We assessed the outcomes using logistic regression analysis and Cox regression. Results: Ninety patients with a median age at last evaluation of 15.7 years and a median follow-up duration of 9.8 years were included. Out of 90 individuals with a benign PN, 37 developed plexiform neurofibroma morbidity during follow-up. Older age was (corrected for pathogenic NF1 variant and PN location) significantly associated with plexiform neurofibroma morbidity. Cox regression revealed that craniofacial and trunk PNs were associated with a higher intervention hazard compared to limb PNs. Conclusion: Our pilot multivariate approach identified older age and the location of the PN to be mostly associated with a higher chance of plexiform neurofibroma morbidity and higher intervention hazard. This may contribute to decisions regarding in whom and when to initiate treatment in NF1 patients with PNs. [ABSTRACT FROM AUTHOR]

Published
2025
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20. A NICE combination for predicting hospitalisation at the Emergency Department: a European multicentre observational study of febrile children

Author

Borensztajn, Dorine M., Hagedoorn, Nienke N., Carrol, Enitan D., von Both, Ulrich, Dewez, Juan Emmanuel, Emonts, Marieke, van der Flier, Michiel, de Groot, Ronald, Herberg, Jethro, Kohlmaier, Benno, Lim, Emma, Maconochie, Ian K., Martinon-Torres, Federico, Nieboer, Daan, Nijman, Ruud G., Oostenbrink, Rianne, Pokorn, Marko, Calle, Irene Rivero, Strle, Franc, Tsolia, Maria, Vermont, Clementien L., Yeung, Shunmay, Zavadska, Dace, Zenz, Werner, Levin, Michael, and Moll, Henriette A.

Published
2021
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22. Revised diagnostic criteria for neurofibromatosis type 1 and Legius syndrome: an international consensus recommendation

Author

Legius, Eric, Messiaen, Ludwine, Wolkenstein, Pierre, Pancza, Patrice, Avery, Robert A., Berman, Yemima, Blakeley, Jaishri, Babovic-Vuksanovic, Dusica, Cunha, Karin Soares, Ferner, Rosalie, Fisher, Michael J., Friedman, Jan M., Gutmann, David H., Kehrer-Sawatzki, Hildegard, Korf, Bruce R., Mautner, Victor-Felix, Peltonen, Sirkku, Rauen, Katherine A., Riccardi, Vincent, Schorry, Elizabeth, Stemmer-Rachamimov, Anat, Stevenson, David A., Tadini, Gianluca, Ullrich, Nicole J., Viskochil, David, Wimmer, Katharina, Yohay, Kaleb, Gomes, Alicia, Jordan, Justin T., Mautner, Victor, Merker, Vanessa L., Smith, Miriam J., Stevenson, David, Anten, Monique, Aylsworth, Arthur, Baralle, Diana, Barbarot, Sebastien, Barker, Fred, II, Ben-Shachar, Shay, Bergner, Amanda, Bessis, Didier, Blanco, Ignacio, Cassiman, Catherine, Ciavarelli, Patricia, Clementi, Maurizio, Frébourg, Thierry, Giovannini, Marco, Halliday, Dorothy, Hammond, Chris, Hanemann, C.O., Hanson, Helen, Heiberg, Arvid, Joly, Pascal, Kalamarides, Michel, Karajannis, Matthias, Kroshinsky, Daniela, Larralde, Margarita, Lázaro, Conxi, Le, Lu, Link, Michael, Listernick, Robert, MacCollin, Mia, Mallucci, Conor, Moertel, Christopher, Mueller, Amy, Ngeow, Joanne, Oostenbrink, Rianne, Packer, Roger, Papi, Laura, Parry, Allyson, Peltonen, Juha, Pichard, Dominique, Poppe, Bruce, Rezende, Nilton, Rodrigues, Luiz Oswaldo, Rosser, Tena, Ruggieri, Martino, Serra, Eduard, Steinke-Lange, Verena, Stivaros, Stavros Michael, Taylor, Amy, Toelen, Jaan, Tonsgard, James, Trevisson, Eva, Upadhyaya, Meena, Varan, Ali, Wilson, Meredith, Wu, Hao, Zadeh, Gelareh, Huson, Susan M., Evans, D. Gareth, and Plotkin, Scott R.

Published
2021
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25. Preparedness and Response to Pediatric COVID-19 in European Emergency Departments: A Survey of the REPEM and PERUKI Networks

Author

Hachimi-Idrissi, Said, Sjølin Frederiksen, Marianne, Uustalu, Ulle, Cheron, Gerard, Hoffmann, Florian, Thors, Valtyr, Barrett, Michael J., Shavit, Itai, Pucuka, Zanda, Jankauskaite, Lina, Mação, Patrícia, Orfanos, Ioannis, Lacroix, Laurence, Bressan, Silvia, Buonsenso, Danilo, Farrugia, Ruth, Parri, Niccolo’, Oostenbrink, Rianne, Titomanlio, Luigi, Roland, Damian, Nijman, Ruud G., Maconochie, Ian, Da Dalt, Liviana, and Mintegi, Santiago

Published
2020
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26. Examination of the genetic factors underlying the cognitive variability associated with neurofibromatosis type 1

Author

Ottenhoff, Myrthe J., Rietman, André B., Mous, Sabine E., Plasschaert, Ellen, Gawehns, Daniela, Brems, Hilde, Oostenbrink, Rianne, van Minkelen, Rick, Nellist, Mark, Schorry, Elizabeth, Legius, Eric, Moll, Henriette A., Elgersma, Ype, de Wit, Marie-Claire Y., de Nijs, Pieter F.A., Legerstee, Jeroen S., Dieleman, Gwendolyn C., and ten Hoopen, Leontine W.

Published
2020
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27. A Blueprint for Clinical-Driven Medical Device Development:The Feverkidstool Application to Identify Children With Serious Bacterial Infection

Author

van Kempen, Evelien B., Vrijlandt, Sanne E.W., van der Geest, Kelly, Lotgering, Sophie, Hueting, Tom A., Oostenbrink, Rianne, van Kempen, Evelien B., Vrijlandt, Sanne E.W., van der Geest, Kelly, Lotgering, Sophie, Hueting, Tom A., and Oostenbrink, Rianne

Abstract

Clinical decision rules (CDRs) integrated into applications enhance diagnostic and treatment prediction support for clinicians, necessitating Confirmité Europeenne (CE)-mark certification to enter the European market. We describe the development of a CDR as a medical device, focusing on challenges from a physician's perspective exemplified by the Feverkidstool (FKT), a validated CDR for febrile children. We pursued a local process, aligned with the CE-marking process, to develop the FKT as in-house developed device. We aimed to provide a blueprint for colleagues. Medical device development, conforming the medical device regulation and performed by a multidisciplinary team, encompassed 5 stages: market scan, design, production, verification and validation and conformity assessment. Regulatory processes were continuously updated. The market scan identified a need for the FKT compared with existing applications. A prototype was designed in stage 2, further adjusted and improved based on the qualitative and quantitative results of stages 2-4. Lastly, stage 5 confirmed FKT's performance and safety. Medical device development presents challenges for physicians, requiring collaboration for technical, regulatory, and financial expertise. Multidisciplinary teamwork also poses challenges, including uncertainties regarding responsibility and timelines. After CE certification, adapting to evolving needs and ensuring data privacy highlights the ongoing nature of medical device development.

Published
2024

28. Treatment of isolated pediatric optic nerve glioma:A nationwide retrospective cohort study and systematic literature review on visual and radiological outcome

Author

Bennebroek, Carlien A., van Swijndregt, Maartje C. Montauban, van Zwol, Judith, Bhusal, Sanjhana, Dittrich, Anne T., Oostenbrink, Rianne, Pott, Jan Willem R., Buijs, Erik A., Schouten-van Meeteren, Antoinette Y., Porro, Giorgio L., de Graaf, Pim, Saeed, Peerooz, Bennebroek, Carlien A., van Swijndregt, Maartje C. Montauban, van Zwol, Judith, Bhusal, Sanjhana, Dittrich, Anne T., Oostenbrink, Rianne, Pott, Jan Willem R., Buijs, Erik A., Schouten-van Meeteren, Antoinette Y., Porro, Giorgio L., de Graaf, Pim, and Saeed, Peerooz

Abstract

Background: Progressive isolated optic nerve glioma (ONG) in children is a rare disease, treated with various modalities. A global treatment consensus is not available. Methods: We conducted a national retrospective multicenter cohort study (1995–2020) to investigate how different treatment strategies impact outcome for ONG in children, by assessing treatment responses to systemic anticancer therapy (SAT), surgery, and radiotherapy for ONG. The primary endpoints included changes in best-corrected visual acuity (BCVA) and tumor volume (TV) on MRI, both evaluated at the start and end of therapy and at long-term follow up. Results: A total of 21 ONGs (20 patients) received SAT (n = 14 (66.7%)), surgery (n = 4 (19.0%)), and radiotherapy (n = 3 (14.3%)). After SAT BCVA stabilized or improved in 66.6% (n = 4) and the TV decreased by a median of 45.1% (range: −88.6% to +31.5%) (n = 13). Before resection two eyes were already blind. After resection BCVA decreased to blindness in one eye. In total all four eyes were blind after resection. After first-line RT BCVA decreased in 66.7% of ONG to counting fingers or less, TV increased <3 months after RT by a median of 47.3% (range: −42.8% to +245.1%) (n = 3), followed by a long-term decrease of 94.4 and 13.8% (n = 2), respectively. Conclusion: SAT appears to be the preferred modality for progressive ONG in case of potential rescue of visual functions. Complete resection of ONG appears effective to reduce proptosis in case of preexisting blindness. The use of radiotherapy requires careful consideration due to the risk of severe visual impairment and secondary disease.

Published
2024

29. The PlexiQoL, a patient-reported outcome measure on quality of life in neurofibromatosis type 1-associated plexiform neurofibroma:translation, cultural adaptation and validation into the Dutch language for the Netherlands

Author

Dhaenens, Britt A.E., van Dijk, Sarah A., Taal, Walter, Noordhoek, D. Christine, Coffey, Anna, McKenna, Stephen P., Oostenbrink, Rianne, Dhaenens, Britt A.E., van Dijk, Sarah A., Taal, Walter, Noordhoek, D. Christine, Coffey, Anna, McKenna, Stephen P., and Oostenbrink, Rianne

Published
2024

30. Treatment evaluation by volumetric segmentation in pediatric optic pathway glioma: evaluation of the effect of bevacizumab on intra-tumor components

Author

Zorgeenheid Oogheelkunde Medisch, MS Oogheelkunde, Brain, Cancer, Bennebroek, Carlien A., Schouten, Christiaan R., Montauban-van Swijndregt, Maartje C., Saeed, Peerooz, Porro, Giorgio L., Pott, Jan W.R., Dittrich, Anne T.M., Oostenbrink, Rianne, Schouten-van Meeteren, Antoinette Y., de Jong, Marcus C., de Graaf, Pim, Zorgeenheid Oogheelkunde Medisch, MS Oogheelkunde, Brain, Cancer, Bennebroek, Carlien A., Schouten, Christiaan R., Montauban-van Swijndregt, Maartje C., Saeed, Peerooz, Porro, Giorgio L., Pott, Jan W.R., Dittrich, Anne T.M., Oostenbrink, Rianne, Schouten-van Meeteren, Antoinette Y., de Jong, Marcus C., and de Graaf, Pim

Published
2024

31. Hypomagnesaemia with varying degrees of extrarenal symptoms as a consequence of heterozygous CNNM2 variants

Author

Genetica, Genetica Klinische Genetica, Cancer, Child Health, Bosman, Willem, Franken, Gijs A.C., de las Heras, Javier, Madariaga, Leire, Barakat, Tahsin Stefan, Oostenbrink, Rianne, van Slegtenhorst, Marjon, Perdomo-Ramírez, Ana, Claverie-Martín, Félix, van Eerde, Albertien M., Vargas-Poussou, Rosa, Dubourg, Laurence Derain, González-Recio, Irene, Martínez-Cruz, Luis Alfonso, de Baaij, Jeroen H.F., Hoenderop, Joost G.J., Genetica, Genetica Klinische Genetica, Cancer, Child Health, Bosman, Willem, Franken, Gijs A.C., de las Heras, Javier, Madariaga, Leire, Barakat, Tahsin Stefan, Oostenbrink, Rianne, van Slegtenhorst, Marjon, Perdomo-Ramírez, Ana, Claverie-Martín, Félix, van Eerde, Albertien M., Vargas-Poussou, Rosa, Dubourg, Laurence Derain, González-Recio, Irene, Martínez-Cruz, Luis Alfonso, de Baaij, Jeroen H.F., and Hoenderop, Joost G.J.

Published
2024

32. Serum proteomics reveals hemophagocytic lymphohistiocytosis-like phenotype in a subset of patients with multisystem inflammatory syndrome in children

Author

CTI Van Loosdregt, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Child Health, Infection & Immunity, Infectieziekten onderzoek2 (Wildenbeest), Infectieziekten patientenzorg, Genetica Sectie Genoomdiagnostiek, Tulling, Adam J, Holierhoek, Marloes G, Jansen-Hoogendijk, Anja M, Hoste, Levi, Haerynck, Filomeen, Tavernier, Simon J, Oostenbrink, Rianne, Buysse, Corinne M P, Bannier, Michiel A G E, Bekhof, Jolita, Breukels, Mijke, Hammer, Sanne C, Jacobs, Monique A M, Kamps, Arvid W A, van der Linden, Jan W, Lebon, Ankie, Oudshoorn, Johanna H, Tramper-Stranders, Gerdien A, Vastert, Sebastiaan J, Wieringa, Jantien W, Terheggen-Lagro, Suzanne W J, Wildenbeest, Joanne G, von Asmuth, Erik G J, van den Akker, Erik B, van Gijn, Marielle E, Lugthart, Gertjan, Buddingh, Emilie P, CTI Van Loosdregt, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Child Health, Infection & Immunity, Infectieziekten onderzoek2 (Wildenbeest), Infectieziekten patientenzorg, Genetica Sectie Genoomdiagnostiek, Tulling, Adam J, Holierhoek, Marloes G, Jansen-Hoogendijk, Anja M, Hoste, Levi, Haerynck, Filomeen, Tavernier, Simon J, Oostenbrink, Rianne, Buysse, Corinne M P, Bannier, Michiel A G E, Bekhof, Jolita, Breukels, Mijke, Hammer, Sanne C, Jacobs, Monique A M, Kamps, Arvid W A, van der Linden, Jan W, Lebon, Ankie, Oudshoorn, Johanna H, Tramper-Stranders, Gerdien A, Vastert, Sebastiaan J, Wieringa, Jantien W, Terheggen-Lagro, Suzanne W J, Wildenbeest, Joanne G, von Asmuth, Erik G J, van den Akker, Erik B, van Gijn, Marielle E, Lugthart, Gertjan, and Buddingh, Emilie P

Published
2024

33. Quality of life in individuals with neurofibromatosis type 1 associated cutaneous neurofibromas:validation of the Dutch cNF-Skindex

Author

Dhaenens, Britt A.E., van Dijk, Sarah A., Fertitta, Laura, Taal, Walter, Wolkenstein, Pierre, Oostenbrink, Rianne, Dhaenens, Britt A.E., van Dijk, Sarah A., Fertitta, Laura, Taal, Walter, Wolkenstein, Pierre, and Oostenbrink, Rianne

Abstract

Background: Almost all patients with Neurofibromatosis type 1 (NF1) develop cutaneous neurofibroma (cNF), benign dermal tumours that have a large impact on the patient’s Quality of Life (QoL). The French cNF-Skindex is the first questionnaire to specifically assess cNF-related QoL in patients with NF1. We aimed to adapt and validate a Dutch version of the cNF-Skindex. Methods: The questionnaire was translated using forward and backwards translation, and subsequently administered to a sample of 59 patients on two separate occasions. Feasibility was evaluated by the presence of floor/ceiling effects. Reliability was assessed by evaluating internal consistency and test-retest reliability, by calculating Cronbach’s alpha and Spearman’s rank correlation coefficients. The EQ-5D-5L and SF-36 were used to evaluate convergent validity, using Spearman’s rank correlation coefficients. An exploratory factor analysis was performed to study the data’s internal structure. Multivariable linear regression was used to model the relationship between patient characteristics and the cNF-Skindex. Results: The Dutch cNF-Skindex demonstrated excellent feasibility and reliability (Cronbach’s alpha 0.96, test-retest correlation coefficient 0.88). Convergent validity was confirmed for the EQ-5D-5L and relevant SF-36 scales. All items and subdomains from the original questionnaire were confirmed following exploratory factor analysis. The patient characteristics included in the multivariable linear regression were not significantly associated with the cNF-Skindex score. Conclusions: The Dutch cNF-Skindex displayed excellent psychometric properties, enabling use in the Netherlands.

Published
2024

34. Platform trial design for neurofibromatosis type 1, NF2-related schwannomatosis and non-NF2-related schwannomatosis:A potential model for rare diseases

Author

Dhaenens, Britt A. E., Heimann, Guenter, Bakker, Annette, Nievo, Marco, Ferner, Rosalie E., Evans, D. Gareth, Wolkenstein, Pierre, Leubner, Jonas, Potratz, Cornelia, Carton, Charlotte, Iloeje, Uchenna, Kirk, George, Blakeley, Jaishri O., Plotkin, Scott, Fisher, Michael J., Kim, Aerang, Driever, Pablo Hernaiz, Azizi, Amedeo A., Widemann, Brigitte C., Gross, Andrea, Parke, Tom, Legius, Eric, Oostenbrink, Rianne, Dhaenens, Britt A. E., Heimann, Guenter, Bakker, Annette, Nievo, Marco, Ferner, Rosalie E., Evans, D. Gareth, Wolkenstein, Pierre, Leubner, Jonas, Potratz, Cornelia, Carton, Charlotte, Iloeje, Uchenna, Kirk, George, Blakeley, Jaishri O., Plotkin, Scott, Fisher, Michael J., Kim, Aerang, Driever, Pablo Hernaiz, Azizi, Amedeo A., Widemann, Brigitte C., Gross, Andrea, Parke, Tom, Legius, Eric, and Oostenbrink, Rianne

Abstract

Background Neurofibromatosis type 1, NF2-related schwannomatosis and non-NF2-related schwannomatosis (grouped under the abbreviation "NF") are rare hereditary tumor predisposition syndromes. Due to the low prevalence, variability in the range, and severity of manifestations, as well as limited treatment options, these conditions require innovative trial designs to accelerate the development of new treatments.Methods Within European Patient-Centric Clinical Trial Platforms (EU-PEARL), we designed 2 platform-basket trials in NF. The trials were designed by a team of multidisciplinary NF experts and trial methodology experts.Results The trial will consist of an observational and a treatment period. The observational period will serve as a longitudinal natural history study. The platform trial design and randomization to a sequence of available interventions allow for the addition of interventions during the trial. If a drug does not meet the predetermined efficacy endpoint or reveals unacceptable toxicities, participants may stop treatment on that arm and re-enter the observational period, where they can be re-randomized to a different treatment arm if eligible. Intervention-specific eligibility criteria and endpoints are listed in intervention-specific-appendices, allowing the flexibility and adaptability needed for highly variable and rare conditions like NF.Conclusions These innovative platform-basket trials for NF may serve as a model for other rare diseases, as they will enhance the chance of identifying beneficial treatments through optimal learning from a small number of patients. The goal of these trials is to identify beneficial treatments for NF more rapidly and at a lower cost than traditional, single-agent clinical trials.

Published
2024

37. Antibiotic prescription for febrile children in European emergency departments: a cross-sectional, observational study

Author

Moll, Henriette A., Oostenbrink, Rianne, van Veen, Mirjam, Noordzij, Jeroen G., Smit, Frank, van Wermeskerken, Anne-Marie, Angoulvant, Francois, Dubos, Francois, Gras-Leguen, Christele, Desmarest, Marie, Aurel, Marie, Gajdos, Vincent, Joffre, Christelle, Mintegi, Santiago, Acedo, Yordana, Herrero Garcia, Laura, Medina, Inmaculada, Cózar, Juan Alonso, Fernandez Arribas, Jose Luis, Pinto, Sara, Sá, Gabriela, Mação, Patrícia, Silva, Daniela, Zarcos, Maria, Seiler, Michelle, Gervaix, Alain, Maconochie, Ian, Olesen, Hanne, Bønnelykke, Christiane, Parri, Niccolò, Fichera, Vito, Arrhigini, Alberto, Bressan, Silvia, Da Dalt, Liviana, Moldovan, Diana, Dreghiciu, Daniela-Maria, Bognar, Zsolt, Yilmaz, Hayri L., Sari Gökay, Sinem, van de Maat, Josephine, van de Voort, Elles, Nieboer, Daan, and Moll, Henriette

Published
2019
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38. Platform trial design for Neurofibromatosis type 1, NF2-related Schwannomatosis and non-NF2-related Schwannomatosis: a potential model for rare diseases

Author

Dhaenens, Britt A E, primary, Heimann, Günter, additional, Bakker, Annette, additional, Nievo, Marco, additional, Ferner, Rosalie E, additional, Evans, D Gareth, additional, Wolkenstein, Pierre, additional, Leubner, Jonas, additional, Potratz, Cornelia, additional, Carton, Charlotte, additional, Iloeje, Uchenna, additional, Kirk, George, additional, Blakeley, Jaishri O, additional, Plotkin, Scott, additional, Fisher, Michael J, additional, Kim, Ae Rang, additional, Driever, Pablo Hernáiz, additional, Azizi, Amedeo A, additional, Widemann, Brigitte C, additional, Gross, Andrea, additional, Parke, Tom, additional, Legius, Eric, additional, and Oostenbrink, Rianne, additional

Published
2024
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39. Current state-of-the-art and gaps in platform trials: 10 things you should know, insights from EU-PEARL

Author

Koenig, Franz, primary, Spiertz, Cécile, additional, Millar, Daniel, additional, Rodríguez-Navarro, Sarai, additional, Machín, Núria, additional, Van Dessel, Ann, additional, Genescà, Joan, additional, Pericàs, Juan M., additional, Posch, Martin, additional, Sánchez-Montalva, Adrian, additional, Estevez, Ana Belén, additional, Sánchez, Àlex, additional, Sanjuan, Anna, additional, Sena, Elena, additional, Granados, Emma, additional, Arévalo de Andrés, Esther, additional, Nuñez, Fátima, additional, Arteaga, Gara, additional, Fuentes Ruiz, Gabriela Perez, additional, Fernández, Guillermo, additional, Rivera-Esteban, Jesus, additional, Comella, Joan, additional, Ramos-Quiroga, Josep Antoni, additional, Espinosa, Juan, additional, Pericàs, Juan Manuel, additional, Murcia, Lada, additional, Cash-Gibson, Lucinda, additional, de Valles Silvosa, Maria, additional, Barroso de Sousa, María Fernanda, additional, Sánchez-Maroto Carrizo, Olga, additional, Ibañez-Jiménez, Pol, additional, Augustin, Salvador, additional, Perez-Hoyos, Santiago, additional, Muñoz-Martínez, Sergio, additional, Serres, Silvia, additional, Kalko, Susana, additional, Michon, Amelie, additional, Ussi, Anton, additional, Lydall, Ben, additional, van de Ketterij, Edwin, additional, Quiles, Ignacio, additional, Carapina, Tamara, additional, Kumaus, Constantin, additional, Ramazanova, Dariga, additional, Meyer, Elias Laurin, additional, Koenig, Franz, additional, Roig, Marta Bofill, additional, Brunner, Martin, additional, Krotka, Pavla, additional, Zehetmayer, Sonja, additional, Carton, Charlotte, additional, Legius, Eric, additional, Begum, Amina, additional, Pariante, Carmine, additional, Worrell, Courtney, additional, Lombardo, Giulia, additional, Sforzini, Luca, additional, Brown, Mollie, additional, Gullet, Nancy, additional, Amasi-Hartoonian, Nare, additional, Ferner, Rosalie, additional, Kose, Melisa, additional, Spitaleri, Andrea, additional, Ghodousi, Arash, additional, Di Serio, Clelia, additional, Cirillo, Daniela, additional, Cugnata, Federica, additional, Saluzzo, Francesca, additional, Benedetti, Francesco, additional, Scarale, Maria Giovanna, additional, Zini, Michela, additional, Rancoita, Paola Maria, additional, Alagna, Riccardo, additional, Poletti, Sara, additional, Dhaenens, Britt, additional, Van Der Lei, Johan, additional, de Steenwinkel, Jurriaan, additional, Moinat, Maxim, additional, Oostenbrink, Rianne, additional, Hoogendijk, Witte, additional, Hölscher, Michael, additional, Heinrich, Norbert, additional, Otte, Christian, additional, Potratz, Cornelia, additional, Zocholl, Dario, additional, Kulakova, Eugenia, additional, Tacke, Frank, additional, Brasanac, Jelena, additional, Leubner, Jonas, additional, Krajewska, Maja, additional, Freitag, Michaela Maria, additional, Gold, Stefan, additional, Zoller, Thomas, additional, Chae, Woo Ri, additional, Daniel, Christel, additional, Kara, Leila, additional, Vaterkowski, Morgan, additional, Griffon, Nicolas, additional, Wolkenstein, Pierre, additional, Pais, Raluca, additional, Ratziu, Vlad, additional, Voets, David, additional, Maes, Christophe, additional, Kalra, Dipak, additional, Thienpoint, Geert, additional, Deckerck, Jens, additional, Lea, Nathan, additional, Singleton, Peter, additional, Viele, Kert, additional, Jacko, Peter, additional, Berry, Scott, additional, Parke, Tom, additional, Aydin, Burç, additional, Kubiak, Christine, additional, Demotes, Jacques, additional, Ueda, Keiko, additional, Matei, Mihaela, additional, Contrino, Sergio, additional, Röhl, Claas, additional, Cordero, Estefania, additional, Greenhalgh, Fiona, additional, Jarke, Hannes, additional, Angelova, Juliana, additional, Boudes, Mathieu, additional, Dressler, Stephan, additional, Strammiello, Valentina, additional, Anstee, Quentin, additional, Gutierrez-Ibarluzea, Iñaki, additional, Otte, Maximilian, additional, Heimbach, Natalie, additional, Hofner, Benjamin, additional, Burgwinkel, Cora, additional, Kaestel, Hue, additional, Hees, Katharina, additional, Nguyen, Quynh, additional, Prieto-Alhambra, Daniel, additional, Tan, Eng Hooi (Cheryl), additional, Raviglione, Mario, additional, de Colombani, Pierpaolo, additional, Villa, Simone, additional, Maron, Eduard, additional, Evans, Gareth, additional, Savitz, Adam J., additional, Duca, Anna, additional, Kaminski, Anne, additional, Wouters, Bie, additional, Porter, Brandon, additional, Charron, Catherine, additional, Spiertz, Cecile, additional, Zizzamia, Christopher, additional, Hasselbaink, Danny, additional, Orr, David, additional, Kesters, Divya, additional, Hubin, Ellen, additional, Davies, Emma, additional, Didden, Eva-Maria, additional, Guz, Gabriela, additional, Verstraete, Evelyn, additional, Mao, Gary, additional, Capuano, George, additional, Martynowicz, Heddie, additional, De Smedt, Heidi, additional, Larsson, Ingela, additional, Bruegelmans, Ines, additional, Coste, Isabelle, additional, Gonzalez Moreno, Jesus Maria, additional, Niewczas, Julia, additional, Xu, Jiajun, additional, Rombouts, Karin, additional, Woo, Katherine, additional, Wuyts, Kathleen, additional, Hersh, Kathryn, additional, Oldenburg, Khrista, additional, Zhang, Lingjiao, additional, Schmidt, Mark, additional, Szuch, Mark, additional, Todorovic, Marija, additional, Mangelaars, Maartje, additional, Grewal, Melissa, additional, Sandor, Molli, additional, Di Prospero, Nick, additional, Van Houten, Pamela, additional, Minnick, Pansy, additional, Bastos, Polyana, additional, Patrizi, Robert, additional, Morello, Salvatore, additional, De Wilde, Severijn, additional, Sun, Tao, additional, Kline, Timothy, additional, de Marez, Tine, additional, Mielke, Tobias, additional, Reijns, Tom, additional, Popova, Vanina, additional, Flossbach, Yanina, additional, Tymofyeyev, Yevgen, additional, De Groote, Zeger, additional, Sverdlov, Alex, additional, Bobirca, Alexandra, additional, Krause, Annekatrin, additional, Bobrica, Catalin, additional, Heintz, Daniela, additional, Magirr, Dominic, additional, Glimm, Ekkehard, additional, Baffert, Fabienne, additional, Castiglione, Federica, additional, Caruso, Franca, additional, Patalano, Francesco, additional, Bretz, Frank, additional, Heimann, Guenter, additional, Carbarns, Ian, additional, Rodríguez, Ignacio, additional, Ratescu, Ioana, additional, Hampson, Lisa, additional, Pedrosa, Marcos, additional, Hark, Mareile, additional, Mesenbrink, Peter, additional, Penna, Sabina Hernandez, additional, Bergues-Lang, Sarah, additional, Baltes-Engler, Susanne, additional, Arsiwala, Tasneem, additional, Mondragon, Valeria Jordan, additional, Guo, Hua, additional, Da Costa, Jose Leite, additional, Burman, Carl-Fredrik, additional, Kirk, George, additional, Aaes-Jørgensen, Anders, additional, Dirach, Jorgen, additional, Kjær, Mette Skalshøi, additional, Martin, Alexandra, additional, Hristov, Diyan, additional, Rousseaux, Florent, additional, Hittel, Norbert, additional, Dornheim, Robert, additional, Evans, Daniel, additional, Sykes, Nick, additional, Couvert, Camille, additional, Leuven, Catherine, additional, Notelet, Loïc, additional, Gidh-Jain, Madhavi, additional, Jouannin, Mathieu, additional, Ammour, Nadir, additional, Pierre, Suzanne, additional, Haufe, Volker, additional, Dong, Yingwen, additional, Dubanchet, Catherine, additional, de Préville, Nathalie, additional, Baltauss, Tania, additional, Jian, Zhu, additional, Shnider, Sara, additional, Bar-El, Tal, additional, Bakker, Annette, additional, Nievo, Marco, additional, Iloeje, Uche, additional, Conradie, Almari, additional, Auffarrth, Ece, additional, Lombard, Leandra, additional, Benhayoun, Majda, additional, Olugbosi, Morounfolu, additional, Seidel, Stephanie S., additional, Gumí, Berta, additional, Guzmán, Claudia García, additional, Molero, Eva, additional, Pairó, Gisela, additional, Machin, Núria, additional, Cardelús, Raimon, additional, Ramasastry, Saira, additional, Pelzer, Saskia, additional, Kremer, Andreas, additional, Lindfors, Erno, additional, and Lynch, Chris, additional

Published
2024
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40. Treatment evaluation by volumetric segmentation in pediatric optic pathway glioma: evaluation of the effect of bevacizumab on intra-tumor components

Author

Bennebroek, Carlien A., primary, Schouten, Christiaan R., additional, Montauban-van Swijndregt, Maartje C., additional, Saeed, Peerooz, additional, Porro, Giorgio L., additional, Pott, Jan W. R., additional, Dittrich, Anne T. M., additional, Oostenbrink, Rianne, additional, Schouten-van Meeteren, Antoinette Y., additional, de Jong, Marcus C., additional, and de Graaf, Pim, additional

Published
2023
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41. Presentations of children to emergency departments across Europe and the COVID-19 pandemic: A multinational observational study

Author

Nijman, Ruud G., Honeyford, Kate, Farrugia, Ruth, Rose, Katy, Bognar, Zsolt, Buonsenso, Danilo, Da Dalt, Liviana, De, Tisham, Maconochie, Ian K., Parri, Niccolo, Roland, Damian, Alfven, Tobias, Aupiais, Camille, Barrett, Michael, Basmaci, Romain, Borensztajn, Dorine, Castanhinha, Susana, Vasilico, Corrine, Durnin, Sheena, Fitzpatrick, Paddy, Fodor, Laszlo, Gomez, Borja, Greber-Platzer, Susanne, Guedj, Romain, Hartshorn, Stuart, Hey, Florian, Jankauskaite, Lina, Kohlfuerst, Daniela, Kolnik, Mojca, Lyttle, Mark D., Mação, Patrícia, Mascarenhas, Maria Inês, Messahel, Shrouk, Özkan, Esra Akyüz, Pucuka, Zanda, Reis, Sofia, Rybak, Alexis, Ryd Rinder, Malin, Teksam, Ozlem, Turan, Caner, Thors, Valtýr Stefánsson, Velasco, Roberto, Bressan, Silvia, Moll, Henriette A., Oostenbrink, Rianne, and Titomanlio, Luigi

Subjects
Influence, Forecasts and trends, Market trend/market analysis, Epidemics -- Influence, COVID-19 -- Influence, Pediatric emergencies -- Forecasts and trends
Abstract

Author(s): Ruud G. Nijman 1,2,3,*, Kate Honeyford 4, Ruth Farrugia 5, Katy Rose 1,6, Zsolt Bognar 7, Danilo Buonsenso 8,9, Liviana Da Dalt 10, Tisham De 2, Ian K. Maconochie [...], Background During the initial phase of the Coronavirus Disease 2019 (COVID-19) pandemic, reduced numbers of acutely ill or injured children presented to emergency departments (EDs). Concerns were raised about the potential for delayed and more severe presentations and an increase in diagnoses such as diabetic ketoacidosis and mental health issues. This multinational observational study aimed to study the number of children presenting to EDs across Europe during the early COVID-19 pandemic and factors influencing this and to investigate changes in severity of illness and diagnoses. Methods and findings Routine health data were extracted retrospectively from electronic patient records of children aged 18 years and under, presenting to 38 EDs in 16 European countries for the period January 2018 to May 2020, using predefined and standardized data domains. Observed and predicted numbers of ED attendances were calculated for the period February 2020 to May 2020. Poisson models and incidence rate ratios (IRRs), using predicted counts for each site as offset to adjust for case-mix differences, were used to compare age groups, diagnoses, and outcomes. Reductions in pediatric ED attendances, hospital admissions, and high triage urgencies were seen in all participating sites. ED attendances were relatively higher in countries with lower SARS-CoV-2 prevalence (IRR 2·26, 95% CI 1·90 to 2·70, p < 0.001) and in children aged Conclusions Reductions in ED attendances were seen across Europe during the first COVID-19 lockdown period. More severely ill children continued to attend hospital more frequently compared to those with minor injuries and illnesses, although absolute numbers fell. Trial registration ISRCTN91495258 https://www.isrctn.com/ISRCTN91495258.

Published
2022
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48. Optimizing expert and patient input in pediatric trial design: Lessons learned and recommendations from a collaboration between conect4children and European Patient‐CEntric ClinicAl TRial PLatforms

Author

Dhaenens, Britt A. E., primary, Mahler, Fenna, additional, Batchelor, Hannah, additional, Dicks, Pamela, additional, Gaillard, Segolene, additional, Nafria, Begonya, additional, Kopp‐Schneider, Annette, additional, Ribeiro, Maria Alexandra, additional, Schwab, Matthias, additional, Sparber‐Sauer, Monika, additional, Leubner, Jonas, additional, de Wildt, Saskia N., additional, and Oostenbrink, Rianne, additional

Published
2023
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49. Respective roles of non-pharmaceutical interventions in bronchiolitis outbreaks:an interrupted time-series analysis based on a multinational surveillance system

Author

Lenglart, Lea, Ouldali, Naim, Honeyford, Kate, Bognar, Zsolt, Bressan, Silvia, Buonsenso, Danilo, Da Dalt, Liviana, De, Tisham, Farrugia, Ruth, Maconochie, Ian K., Moll, Henriette A., Oostenbrink, Rianne, Parri, Niccolo, Roland, Damian, Rose, Katy, Özkan, Esra Akyüz, Angoulvant, François, Aupiais, Camille, Barber, Clarissa, Barrett, Michael, Basmaci, Romain, Castanhinha, Susana, Chiaretti, Antonio, Durnin, Sheena, Fitzpatrick, Patrick, Fodor, Laszlo, Gomez, Borja, Greber-Platzer, Susanne, Guedj, Romain, Hey, Florian, Jankauskaite, Lina, Kohlfuerst, Daniela, Mascarenhas, Ines, Musolino, Anna Maria, Pučuka, Zanda, Reis, Sofia, Rybak, Alexis, Salamon, Petra, Schaffert, Matthias, Shahar-Nissan, Keren, Supino, Maria Chiara, Teksam, Ozlem, Turan, Caner, Velasco, Roberto, Nijman, Ruud G., Titomanlio, Luigi, Covino, Marcello, Villani, Alberto, Lieb, Katharina, Hoffmann, Florian, Lenglart, Lea, Ouldali, Naim, Honeyford, Kate, Bognar, Zsolt, Bressan, Silvia, Buonsenso, Danilo, Da Dalt, Liviana, De, Tisham, Farrugia, Ruth, Maconochie, Ian K., Moll, Henriette A., Oostenbrink, Rianne, Parri, Niccolo, Roland, Damian, Rose, Katy, Özkan, Esra Akyüz, Angoulvant, François, Aupiais, Camille, Barber, Clarissa, Barrett, Michael, Basmaci, Romain, Castanhinha, Susana, Chiaretti, Antonio, Durnin, Sheena, Fitzpatrick, Patrick, Fodor, Laszlo, Gomez, Borja, Greber-Platzer, Susanne, Guedj, Romain, Hey, Florian, Jankauskaite, Lina, Kohlfuerst, Daniela, Mascarenhas, Ines, Musolino, Anna Maria, Pučuka, Zanda, Reis, Sofia, Rybak, Alexis, Salamon, Petra, Schaffert, Matthias, Shahar-Nissan, Keren, Supino, Maria Chiara, Teksam, Ozlem, Turan, Caner, Velasco, Roberto, Nijman, Ruud G., Titomanlio, Luigi, Covino, Marcello, Villani, Alberto, Lieb, Katharina, and Hoffmann, Florian

Abstract

Background Bronchiolitis is a major source of morbimortality among young children worldwide. Non-pharmaceutical interventions (NPIs) implemented to reduce the spread of severe acute respiratory syndrome coronavirus 2 may have had an important impact on bronchiolitis outbreaks, as well as major societal consequences. Discriminating between their respective impacts would help define optimal public health strategies against bronchiolitis. We aimed to assess the respective impact of each NPI on bronchiolitis outbreaks in 14 European countries. Methods We conducted a quasi-experimental interrupted time-series analysis based on a multicentre international study. All children diagnosed with bronchiolitis presenting to the paediatric emergency department of one of 27 centres from January 2018 to March 2021 were included. We assessed the association between each NPI and change in the bronchiolitis trend over time by seasonally adjusted multivariable quasi-Poisson regression modelling. Results In total, 42 916 children were included. We observed an overall cumulative 78% (95% CI −100–−54%; p<0.0001) reduction in bronchiolitis cases following NPI implementation. The decrease varied between countries from −97% (95% CI −100– −47%; p=0.0005) to −36% (95% CI −79–7%; p=0.105). Full lockdown (incidence rate ratio (IRR) 0.21 (95% CI 0.14–0.30); p<0.001), secondary school closure (IRR 0.33 (95% CI 0.20–0.52); p<0.0001), wearing a mask indoors (IRR 0.49 (95% CI 0.25–0.94); p=0.034) and teleworking (IRR 0.55 (95% CI 0.31–0.97); p=0.038) were independently associated with reducing bronchiolitis. Conclusions Several NPIs were associated with a reduction of bronchiolitis outbreaks, including full lockdown, school closure, teleworking and facial masking. Some of these public health interventions may be considered to further reduce the global burden of bronchiolitis.

Published
2023

50. Influence of epidemics and pandemics on paediatric ED use:A systematic review

Author

Roland, Damian, Gardiner, Adam, Razzaq, Darakhshan, Rose, Katy, Bressan, Silvia, Honeyford, Kate, Buonsenso, Danilo, Da Dalt, Liviana, De, Tisham, Farrugia, Ruth, Parri, Niccolo, Oostenbrink, Rianne, Maconochie, Ian K., Bognar, Zsolt, Moll, Henriette A., Titomanlio, Luigi, Nijman, Ruud Gerard Gerard, Roland, Damian, Gardiner, Adam, Razzaq, Darakhshan, Rose, Katy, Bressan, Silvia, Honeyford, Kate, Buonsenso, Danilo, Da Dalt, Liviana, De, Tisham, Farrugia, Ruth, Parri, Niccolo, Oostenbrink, Rianne, Maconochie, Ian K., Bognar, Zsolt, Moll, Henriette A., Titomanlio, Luigi, and Nijman, Ruud Gerard Gerard

Abstract

Objective To assess the impact of epidemics and pandemics on the utilisation of paediatric emergency care services to provide health policy advice. Setting Systematic review. Design Searches were conducted of Medline, EMBASE, CINAHL, Scopus, Web of Science and the Cochrane Library for studies that reported on changes in paediatric emergency care utilisation during epidemics (as defined by the WHO). Patients Children under 18 years. Interventions National Institutes of Health quality assessment tool for observational cohort and cross-sectional studies was used. Main outcome measures Changes in paediatric emergency care utilisation. Results 131 articles were included within this review, 80% of which assessed the impact of COVID-19. Studies analysing COVID-19, SARS, Middle East respiratory syndrome (MERS) and Ebola found a reduction in paediatric emergency department (PED) visits, whereas studies reporting on H1N1, chikungunya virus and Escherichia coli outbreaks found an increase in PED visits. For COVID-19, there was a reduction of 63.86% (95% CI 60.40% to 67.31%) with a range of -16.5% to -89.4%. Synthesis of results suggests that the fear of the epidemic disease, from either contracting it or its potential adverse clinical outcomes, resulted in reductions and increases in PED utilisation, respectively. Conclusions The scale and direction of effect of PED use depend on both the epidemic disease, the public health measures enforced and how these influence decision-making. Policy makers must be aware how fear of virus among the general public may influence their response to public health advice. There is large inequity in reporting of epidemic impact on PED use which needs to be addressed. Trial registration number CRD42021242808.

Published
2023

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