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| Item Type: | Article |
|---|---|
| Title: | Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD |
| Creators Name: | 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., Kenneally Behne, M., Rodriguez, R.R., Behne, D.W., Blackway, D.W., Coords, B., Blaschke, T.F., Sheard, J., Smith, T.J., 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 |
| ISSN: | 2332-7812 |
| Publisher: | American Academy of Neurology |
| Volume: | 6 |
| Number: | 5 |
| 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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