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Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD

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Item Type:Article
Title:Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD
Creators Name:Cook, L.J. and Rose, J.W. and Alvey, J.S. and Jolley, A.M. and Kuhn, R. and Marron, B. and Pederson, M. and Enriquez, R. and Yearley, J. and McKechnie, S. and Han, M.H. and Tomczak, A.J. and Levy, M. and Mealy, M.A. and Coleman, J. and Bennett, J.L. and Johnson, R. and Barnes-Garcia, M. and Traboulsee, A.L. and Carruthers, R.L. and Lee, L.E. and Schubert, J.J. and McMullen, K. and Kister, I. and Rimler, Z. and Reid, A. and Sicotte, N.L. and Planchon, S.M. and Cohen, J.A. and Ivancic, D. and Sedlak, J.L. and Sand, I.K. and Repovic, P. and Amezcua, L. and Pruitt, A. and Amundson, E. and Chitnis, T. and Mullin, D.S. and Klawiter, E.C. and Russo, A.W. and Riley, C.S. and Onomichi, K.B. and Levine, L. and Nelson, K.E. and Nealon, N.M. and Engel, C. and Kruse-Hoyer, M. and Marcille, M. and Tornes, L. and Rumpf, A. and Greer, A. and Kenneally Behne, M. and Rodriguez, R.R. and Behne, D.W. and Blackway, D.W. and Coords, B. and Blaschke, T.F. and Sheard, J. and Smith, T.J. and Behne, J.M. and Yeaman, M.R.
Abstract: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. CONCLUSION: 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.
Keywords:Biomedical Research, Cohort Studies, Internationality, Intersectoral Collaboration, Longitudinal Studies, Neuromyelitis Optica
Source:Neurology Neuroimmunology & Neuroinflammation
Publisher:American Academy of Neurology
Page Range:e583
Date:September 2019
Additional Information:Friedemann Paul is a coinvestigator of The Guthy-Jackson Charitable Foundation International Clinical Consortium (GJCF-ICC).
Official Publication:https://doi.org/10.1212/NXI.0000000000000583
PubMed:View item in PubMed

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