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Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD
Lawrence J Cook1, John W Rose1, Jessica S Alvey1
1University of Utah School of Medicine (L.J.C., J.W.R., J.S.A., A.M.J., R.K., B.M., M.P., R.E., J.Y., S.M.), Salt Lake City; Division of Neuroimmunology and Multiple Sclerosis Center (M.H.H.), Department of Neurology and Neurological Sciences, Stanford University; Department of Neurology and Neurological Sciences (A.J.T.), Stanford School of Medicine, CA; Department of Neurology, Johns Hopkins University School of Medicine (M.L., M.A.M., J.C.), Baltimore, MD; Departments of Neurology and Ophthalmology (J.L.B., R.J., M.B.-G.), University of Colorado School of Medicine, Aurora; Department of Medicine & Neurology (A.L.T., R.L.C., L.E.L., J.J.S., K.M.), University of British Columbia, Vancouver, Canada; NYU Langone Health (I.K., Z.R., A.R.), New York; Department of Neurology, Cedars-Sinai Medical Center (N.L.S.), Los Angeles, CA; Mellen Center for MS Treatment and Research (S.M.P., J.A.C., D.I., J.L.S.), Neurological Institute, Cleveland Clinic, OH; Icahn School of Medicine at Mount Sinai (I.K.S.), New York; Multiple Sclerosis Center (P.R.), Swedish Neuroscience Institute, Seattle, WA; Department of Neurology (L.A., A.P., E.A.), Keck School of Medicine, University of Southern California, Los Angeles; Department of Neurology (T.C., D.S.M.), Brigham and Women's Hospital, Harvard Medical School, Boston, MA; Department of Neurology (E.C.K., A.W.R.), Massachusetts General Hospital, Harvard Medical School, Boston; Department of Neurology (C.S.R., K.B.O., L.L., K.E.N.), Columbia University Medical Center; Weill Cornell Medicine (M.M.N., C.E., M.K.-H., M.M.), New York; Department of Neurology (L.T.), Division of Multiple Sclerosis, University of Miami Miller School of Medicine, FL; PPD (A.R., A.G.), Wilmington, NC; The Guthy-Jackson Charitable Foundation (M.K.B., R.R.R., D.W. Behne., D.W. Blackway, B.C., J.S., J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, CA; Kellogg Eye Center (T.J.S.), University of Michigan Medical School, Ann Arbor; Department of Medicine, University of California, Los Angeles (M.R.Y.); and Harbor-UCLA Medical Center/LABioMed (M.R.Y.), Torrance, CA.
The Collaborative International Research in Clinical and Longitudinal Experience Study (CIRCLES) created a valuable resource for neuromyelitis optica spectrum disorder (NMOSD) research. This study provides key epidemiological and clinical data to accelerate understanding and treatment of NMOSD.
Area of Science:
- Neurology
- Immunology
- Epidemiology
Background:
- Neuromyelitis optica spectrum disorder (NMOSD) is a rare autoimmune disease affecting the central nervous system.
- Understanding NMOSD epidemiology and pathogenesis is crucial for developing effective treatments.
Purpose of the Study:
- To establish a comprehensive resource of longitudinal clinical data and biospecimens for NMOSD research.
- To facilitate investigations into NMOSD epidemiology, pathogenesis, and treatment.
Main Methods:
- The Collaborative International Research in Clinical and Longitudinal Experience Study (CIRCLES) enrolled over 1,000 participants, including NMOSD patients and controls.
- Epidemiologic patterns and disease phenotypes were assessed, including age at onset, annualized relapse rate (ARR), and time between attacks.
Main Results:
- As of December 2017, CIRCLES had over 1,000 participants with high follow-up rates.
- Among 599 active NMOSD cases, 84% were female, 76% were anti-AQP4 seropositive, with a median onset age of 38.4 years and ARR of 0.5.
- Demographic data revealed a majority white/Caucasian cohort, with significant representation from Black/African American, Hispanic/Latino, and Asian populations. Seropositive cases were older at onset and more likely female and of minority ethnicity.
Conclusions:
- The CIRCLES study serves as a valuable and accessible resource for NMOSD research.
- This data resource will accelerate the development of solutions and treatments for patients with NMOSD.
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