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Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD.

TitleCollaborative International Research in Clinical and Longitudinal Experience Study in NMOSD.
Publication TypeJournal Article
Year of Publication2019
AuthorsCook LJ, Rose JW, Alvey JS, Jolley AMarie, Kuhn R, Marron B, Pederson M, Enriquez R, Yearley J, McKechnie S, Han MH, Tomczak AJ, Levy M, Mealy MA, Coleman J, Bennett JL, Johnson R, Barnes-Garcia M, Traboulsee AL, Carruthers RL, Lee LEunyoung, Schubert JJ, McMullen K, Kister I, Rimler Z, Reid A, Sicotte NL, Planchon SM, Cohen JA, Ivancic D, Sedlak JL, Sand IKatz, Repovic P, Amezcua L, Pruitt A, Amundson E, Chitnis T, Mullin DS, Klawiter EC, Russo AW, Riley CS, Onomichi KB, Levine L, Nelson KE, Nealon NM, Engel C, Kruse-Hoyer M, Marcille M, Tornes L, Rumpf A, Greer A, Behne MKenneally, Rodriguez RR, Behne DW, Blackway DW, Coords B, Blaschke TF, Sheard J, Smith TJ, Behne JM, Yeaman MR
Corporate AuthorsGuthy-Jackson Charitable Foundation International Clinical Consortium(GJCF–ICC)
JournalNeurol Neuroimmunol Neuroinflamm
Volume6
Issue5
Paginatione583
Date Published2019 09
ISSN2332-7812
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.

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.

DOI10.1212/NXI.0000000000000583
Alternate JournalNeurol Neuroimmunol Neuroinflamm
PubMed ID31355319
PubMed Central IDPMC6624150
Grant ListR01 EY022936 / EY / NEI NIH HHS / United States
UM1 AI110557 / AI / NIAID NIH HHS / United States

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