Observational Study

. 2019 Jun 28;6(5):e583.

doi: 10.1212/NXI.0000000000000583. eCollection 2019 Sep.

Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD

Lawrence J Cook¹, John W Rose¹, Jessica S Alvey¹, Anna Marie Jolley¹, Renee Kuhn¹, Brie Marron¹, Melissa Pederson¹, Rene Enriquez¹, Jeff Yearley¹, Stephen McKechnie¹, May H Han¹, Anna J Tomczak¹, Michael Levy¹, Maureen A Mealy¹, Jessica Coleman¹, Jeffrey L Bennett¹, Ruth Johnson¹, Myka Barnes-Garcia¹, Anthony L Traboulsee¹, Robert L Carruthers¹, Lisa Eunyoung Lee¹, Julia J Schubert¹, Katrina McMullen¹, Ilya Kister¹, Zoe Rimler¹, Allyson Reid¹, Nancy L Sicotte¹, Sarah M Planchon¹, Jeffrey A Cohen¹, Diane Ivancic¹, Jennifer L Sedlak¹, Ilana Katz Sand¹, Pavle Repovic¹, Lilyana Amezcua¹, Ana Pruitt¹, Erika Amundson¹, Tanuja Chitnis¹, Devin S Mullin¹, Eric C Klawiter¹, Andrew W Russo¹, Claire S Riley¹, Kaho B Onomichi¹, Libby Levine¹, Katherine E Nelson¹, Nancy M Nealon¹, Casey Engel¹, Mason Kruse-Hoyer¹, Melanie Marcille¹, Leticia Tornes¹, Anne Rumpf¹, Angela Greer¹, Megan Kenneally Behne¹, Renee R Rodriguez¹, Daniel W Behne¹, Derek W Blackway¹, Brian Coords¹, Terrence F Blaschke¹, Judy Sheard¹, Terry J Smith¹, Jacinta M Behne¹, Michael R Yeaman¹; Guthy-Jackson Charitable Foundation International Clinical Consortium (GJCF–ICC)

Collaborators, Affiliations

Collaborators

Guthy-Jackson Charitable Foundation International Clinical Consortium (GJCF–ICC):
Hesham Abboud, Orhan Aktas, Ayse Altintas, Metha Apiwattanakul, Nasrin Asgari, Brenda Banwell, Denis Bichuetti, James Bowen, Simon Broadley, Wolfgang Bruck, Philippe Cabre, Jeffrey Cohen, Jerome De Seze, Guillermo Delgado-Garcia, Irena Dujmovic Basurocki, Kazuo Fujihara, Andrew Goodman, Joachim Havla, Kerstin Hellwig, Rogier HIntzen, D Craig Hooper, Raffaele Iorio, Anu Jacob, Sven Jarius, Jorge Andres Jimenez Arango, Gareth John, Ho Jin Kim, Sung Min Kim, Dorlan J Kimbrough, Najib Kissani, Ingo Kleiter, Marco Lana-Peixoto, Annette Langer-Gould, M Isabel Leite, Yaou Liu, Fred Lublin, Youssoufa Maiga, Yang Mao-Draayer, Romain Marignier, Marcelo Matiello, Callene Momtazee, Mark Morrow, Ichiro Nakashima, Kevin O'Connor, Celia Oreja-Guevara, Jacqueline Palace, Lekha Pandit, Friedemann Paul, Naraporn Prayoonwiwat, Anne-Katrin Proöbstel, Peiqing Qian, Chao Quan, Marius Ringelstein, Victor Rivera, Dalia L Rotstein, Klemens Ruprecht, Maria José Sá, Albert Saiz, Ché Serguera, Eslam Shosha, Sasitorn Siritho, Aksel Siva, Ibis Soto de Castillo, Olaf Stuve, Silvia Tenembaum, Pablo Villoslada, Dean Wingerchuk, Jens Würfel, E Ann Yeh, Scott S Zamvil

Affiliation

¹ University 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.

PMID: 31355319
PMCID: PMC6624150
DOI: 10.1212/NXI.0000000000000583

Observational Study

Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD

Lawrence J Cook et al. Neurol Neuroimmunol Neuroinflamm. 2019.

. 2019 Jun 28;6(5):e583.

doi: 10.1212/NXI.0000000000000583. eCollection 2019 Sep.

Authors

Collaborators

Guthy-Jackson Charitable Foundation International Clinical Consortium (GJCF–ICC):
Hesham Abboud, Orhan Aktas, Ayse Altintas, Metha Apiwattanakul, Nasrin Asgari, Brenda Banwell, Denis Bichuetti, James Bowen, Simon Broadley, Wolfgang Bruck, Philippe Cabre, Jeffrey Cohen, Jerome De Seze, Guillermo Delgado-Garcia, Irena Dujmovic Basurocki, Kazuo Fujihara, Andrew Goodman, Joachim Havla, Kerstin Hellwig, Rogier HIntzen, D Craig Hooper, Raffaele Iorio, Anu Jacob, Sven Jarius, Jorge Andres Jimenez Arango, Gareth John, Ho Jin Kim, Sung Min Kim, Dorlan J Kimbrough, Najib Kissani, Ingo Kleiter, Marco Lana-Peixoto, Annette Langer-Gould, M Isabel Leite, Yaou Liu, Fred Lublin, Youssoufa Maiga, Yang Mao-Draayer, Romain Marignier, Marcelo Matiello, Callene Momtazee, Mark Morrow, Ichiro Nakashima, Kevin O'Connor, Celia Oreja-Guevara, Jacqueline Palace, Lekha Pandit, Friedemann Paul, Naraporn Prayoonwiwat, Anne-Katrin Proöbstel, Peiqing Qian, Chao Quan, Marius Ringelstein, Victor Rivera, Dalia L Rotstein, Klemens Ruprecht, Maria José Sá, Albert Saiz, Ché Serguera, Eslam Shosha, Sasitorn Siritho, Aksel Siva, Ibis Soto de Castillo, Olaf Stuve, Silvia Tenembaum, Pablo Villoslada, Dean Wingerchuk, Jens Würfel, E Ann Yeh, Scott S Zamvil

Affiliation

¹ University 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.

PMID: 31355319
PMCID: PMC6624150
DOI: 10.1212/NXI.0000000000000583

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.

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Figures

**Figure 1. Geographic location of CIRCLES clinical sites**

**Figure 2. Age at onset by serostatus and gender**

See this image and copyright information in PMC

References

1. Akaishi T, Nakashima I, Sato DK, Takahashi T, Fujihara K. Neuromyelitis optica spectrum disorders. Neuroimaging Clin N Am 2017;27:251–265. - PubMed
1. Marignier R, Cobo Calvo A, Vukusic S. Neuromyelitis optica and neuromyelitis optica spectrum disorders. Curr Opin Neurol 2017;30:208–215. - PubMed
1. Weinshenker BG, Wingerchuk DM. Neuromyelitis spectrum disorders. Mayo Clin Proc 2017;92:663–679. - PubMed
1. Whittam D, Wilson M, Hamid S, Keir G, Bhojak M, Jacob A. What's new in neuromyelitis optica? A short review for the clinical neurologist. J Neurol 2017;264:2330–2344. - PubMed
1. Flanagan EP, Cabre P, Weinshenker BG, et al. . Epidemiology of aquaporin-4 autoimmunity and neuromyelitis optica spectrum. Ann Neurol 2016;79:775–783. - PMC - PubMed

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Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD

Collaborators

Affiliation

Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD

Authors

Collaborators

Affiliation

Abstract

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Research Materials