Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD.
Neurol Neuroimmunol Neuroinflamm
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.
Neurosciences (Brain & Spine)
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; Kenneally Behne, Megan; Rodriguez, Renee R; Behne, Daniel W; Blackway, Derek W; Coords, Brian; Blaschke, Terrence F; Sheard, Judy; Smith, Terry J; Behne, Jacinta M; and Yeaman, Michael R, "Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD." (2019). Articles, Abstracts, and Reports. 2040.