Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD

Autor: Kaho B. Onomichi, Anna Tomczak, Allyson Reid, Ilya Kister, Jacinta M. Behne, Megan Kenneally Behne, Claire S Riley, Leticia Tornes, Julia J. Schubert, Jeffrey A. Cohen, Michael J. Levy, Devin S. Mullin, Jeffrey Bennett, Lawrence J. Cook, Renee R. Rodriguez, Terrence F. Blaschke, Zoe Rimler, Anthony Traboulsee, Jessica S. Alvey, Casey Engel, Derek W. Blackway, Anne Rumpf, Libby Levine, Anna Marie Jolley, Jennifer L. Sedlak, Ruth Johnson, Tanuja Chitnis, Katrina McMullen, Nancy Nealon, Brie Marron, Renee Kuhn, Mason Kruse-Hoyer, Brian Coords, Andrew W. Russo, Angela Greer, Stephen McKechnie, Terry J. Smith, Sarah M. Planchon, Melanie Marcille, Lilyana Amezcua, F. Rene Enriquez, Michael R. Yeaman, Pavle Repovic, Maureen A. Mealy, Ilana Katz Sand, Jeff Yearley, Erika Amundson, May H. Han, Lisa Eunyoung Lee, John W. Rose, Melissa Pederson, Daniel W. Behne, Robert Carruthers, Katherine E. Nelson, Ana Pruitt, Jessica Coleman, Eric C. Klawiter, Judy Sheard, Diane Ivancic, Nancy L. Sicotte, Myka Barnes-Garcia
Přispěvatelé: İÜC, Neurology, Ayşe Altıntaş ( ORCID 0000-0002-8524-5087 & YÖK ID 11611), Cook, Lawrence J., Rose, John W., Alvey, Jessica S., Jolley, Anna Marie, Kuhn, Renee, Marron, Brie, Pederson, Melissa, Enriquez, Rene, Yearley, Jeff, McKechnie, Stephen, Han, May H., Tomczak, Anna J., Levy, Michael, Mealy, Maureen A., Coleman, Jessica, Bennett, Jeffrey L., Johnson, Ruth, Barnes-Garcia, Myka, Traboulsee, Anthony L., Carruthers, Robert L., Lee, Lisa Eunyoung, Schubert, Julia J., McMullen, Katrina, Kister, Ilya, Rimler, Zoe, Reid, Allyson, Sicotte, Nancy L., Planchon, Sarah M., Cohen, Jeffrey A., Ivancic, Diane, Sedlak, Jennifer L., Sand, Ilana Katz, Repovic, Pavle, Amezcua, Lilyana, Pruitt, Ana, Amundson, Erika, Chitnis, Tanuja, Mullin, Devin S., Klawiter, Eric C., Russo, Andrew W., Riley, Claire S., Onomichi, Kaho B., Levine, Libby, Nelson, Katherine E., Nealon, Nancy M., Engel, Casey, Kruse-Hoyer, Mason, Marcille, Melanie, Tornes, Leticia, Rumpf, Anne, Greer, Angela, Behne, Megan Kenneally, Rodriguez, Renee R., Behne, Daniel W., Blackway, Derek W., Coords, Brian, Blaschke, Terrence F., Sheard, Judy, Smith, Terry J., Behne, Jacinta M., Yeaman, Michael R., Abboud, Hesham, Aktas, Orhan, Altintas, Ayse, Apiwattanakul, Metha, Asgari, Nasrin, Banwell, Brenda, Bichuetti, Denis, Bowen, James, Broadley, Simon, Bruck, Wolfgang, Cabre, Philippe, Cohen, Jeffrey, De Seze, Jerome, Delgado-Garcia, Guillermo, Basuroski, Irena Dujmovic, Fujihara, Kazuo, Goodman, Andrew, Havla, Joachim, Hellwig, Kerstin, Hintzen, Rogier, Hooper, D. Craig, Iorio, Raffaele, Jacob, Anu, Jarius, Sven, Jimenez Arango, Jorge Andres, John, Gareth, Kim, Ho Jin, Kim, Sung Min, Kimbrough, Dorian J., Kissani, Najib, Kleiter, Ingo, Lana-Peixoto, Marco, Leite, M. Isabel, Liu, Yaou, Lublin, Fred, Maiga, Youssoufa, Mao-Draayer, Yang, Marignier, Romain, Matiello, Marcelo, Momtazee, Callene, Morrow, Mark, Nakashima, Ichiro, O'Connor, Kevin, Oreja-Guevara, Celia, Palace, Jacqueline, Pandit, Lekha, Paul, Friedemann, Prayoonwiwat, Naraporn, Probstel, Anne-Katrin, Qian, Peiqing, Quan, Chao, Ringelstein, Marius, Rivera, Victor, Rotstein, Dalia L., Ruprecht, Klemens, Sa, Maria Jose, Saiz, Albert, Serguera, Che, Shosha, Eslam, Siritho, Sasitorn, Siva, Aksel, Soto de Castillo, Ibis, Stuve, Olaf, Tenembaum, Silvia, Villoslada, Pablo, Wingerchuk, Dean, Wuerfel, Jens, Yeh, E. Ann, Zamvil, Scott S., Langer-Gould, Annette, School of Medicine, Department of Neurology
Jazyk: angličtina
Rok vydání: 2019
Předmět:
Zdroj: Neurology® Neuroimmunology & Neuroinflammation
Neurology: Neuroimmunology and NeuroInflammation, 6(5):e583. Lippincott Williams & Wilkins
Cook, L J, Rose, J W, Alvey, J S, Jolley, A M, Kuhn, R, Marron, B, Pederson, M, Enriquez, R, Yearley, J, McKechnie, S, Han, M H, Tomczak, A J, Levy, M, Mealy, M A, Coleman, J, Bennett, J L, Johnson, R, Barnes-Garcia, M, Traboulsee, A L, Carruthers, R L, Lee, L E, Schubert, J J, McMullen, K, Kister, I, Rimler, Z, Reid, A, Sicotte, N L, Planchon, S M, Cohen, J A, Ivancic, D, Sedlak, J L, Sand, I K, Repovic, P, Amezcua, L, Pruitt, A, Amundson, E, Chitnis, T, Mullin, D S, Klawiter, E C, Russo, A W, Riley, C S, Onomichi, K B, Levine, L, Nelson, K E, Nealon, N M, Engel, C, Kruse-Hoyer, M, Marcille, M, Tornes, L, Rumpf, A, Greer, A, Behne, M K, Rodriguez, R R, Behne, D W, Blackway, D W, Coords, B, Blaschke, T F, Sheard, J, Smith, T J, Behne, J M, Yeaman, M R, The Guthy-Jackson Charitable Foundation International Clinical Consortium (GJCF–ICC) & Asgari, N 2019, ' Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD ', Neurology: Neuroimmunology & Neuroinflammation, vol. 6, no. 5, e583 . https://doi.org/10.1212/NXI.0000000000000583
Neurology: Neuroimmunology and Neuroinflammation
ISSN: 2332-7812
DOI: 10.1212/NXI.0000000000000583
Popis: Objective to develop a resource of systematically collected, longitudinal clinical data and biospecimens for assisting in the investigation into neuromyelitis optica spectrum disorder (NMOSD) epidemiology, pathogenesis, and treatment. Methods to illustrate its research-enabling purpose, epidemiologic patterns and disease phenotypes were assessed among enrolled subjects, including age at disease onset, annualized relapse rate (ARR), and time between the first and second attacks. Results as of December 2017, the Collaborative International Research in Clinical and Longitudinal Experience Study (CIRCLES) had enrolled more than 1,000 participants, of whom 77.5% of the NMOSD cases and 71.7% of the controls continue in active follow-up. Consanguineous relatives of patients with NMOSD represented 43.6% of the control cohort. Of the 599 active cases with complete data, 84% were female, and 76% were anti-AQP4 seropositive. The majority were white/Caucasian (52.6%), whereas blacks/African Americans accounted for 23.5%, Hispanics/Latinos 12.4%, and Asians accounted for 9.0%. The median age at disease onset was 38.4 years, with a median ARR of 0.5. Seropositive cases were older at disease onset, more likely to be black/African American or Hispanic/Latino, and more likely to be female. Conclusions collectively, the CIRCLES experience to date demonstrates this study to be a useful and readily accessible resource to facilitate accelerating solutions for patients with NMOSD.
The Guthy-Jackson Charitable Foundation, The CIRCLES Project
Databáze: OpenAIRE
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