@article{63055b21f1154d2aa17b8ba8ebacb53f,
title = "NARCOMS and Other Registries in Multiple Sclerosis: Issues and Insights",
abstract = "Observational studies and registries can play a critical role in elucidating the natural and treated history of multiple sclerosis (MS) and identifying factors associated with outcomes such as disability and health-related quality of life. The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is one of multiple registries worldwide that focuses on people with MS, but one of the very few patient-driven MS registries. On the 25th anniversary of the first data collection for the NARCOMS Registry, we discuss the importance of disease registries in the MS field, describe key concepts related to registry design and management, and highlight findings from MS registries relevant to clinical care or health policy. Int J MS Care. 2021;23:276-284.",
author = "Marrie, {Ruth Ann} and Cutter, {Gary R.} and Fox, {Robert J.} and Timothy Vollmer and Tuula Tyry and Amber Salter",
note = "Funding Information: MedImmune/Viela Bio, MedDay, Merck/Serono, Neurogenesis Ltd, Novartis, Osmotica, Perception Neuroscience, Protolix Biotherapeutics, Recursion/Cerexis Pharmaceuticals, Regeneron, Reckover Pharmaceuticals, Roche, SAB Biotherapeutics, and TG Therapeutics; and being president of Pythagoras, Inc, a private consulting company. Robert J. Fox, MD, MSc, has disclosed receiving consulting fees from AB Science, Biogen, Celgene, EMD Serono, Genentech, Genzyme, Immunic, Janssen, Novartis, Sanofi, and TG Therapeutics; research funding from Biogen, Novartis, and Sanofi; and royalties from Demos Publishing. Timothy Vollmer, MD, has disclosed receiving compensation for lectures and consultancy from Biogen, Genentech/Roche, Viela Bio, Celgene, EMD Serono, and Novartis; and research support from Rocky Mountain Multiple Sclerosis Center, Celgene, Biogen, Anokion, Genentech, F. Hoffmann-La Roche Ltd, GW Pharmaceuticals, and TG Therapeutics Inc. Tuula Tyry, PhD, has disclosed no relevant financial relationships. Amber Salter, PhD, has disclosed serving as a statistical editor for Circulation: Cardiovascular Imaging. The staff at IJMSC, CMSC, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships. Laurie Scudder, DNP, NP, Continuing Education Director CMSC, has served as Reviewer for this activity. She has disclosed no relevant financial relationships. One peer reviewer for IJMSC has disclosed relationships with Alexion (consulting fee, speakers{\textquoteright} bureau); Biogen, Bristol Myers Squibb, EMD Serono, Genentech (consulting fee, speakers{\textquoteright} bureau, contracted research); Celgene, Novartis, Sanofi Genzyme (consulting fee, contracted research); Viela Bio (consulting fee); National MS Society, PCORI, Atara Biotherapeutics, Funding Information: Dr Marrie is supported by the Waugh Family Chair in Multiple Sclerosis and a Manitoba Research Chair. The NARCOMS Registry is a project of the CMSC. Funding Information: Multiple sclerosis (MS) is a complex chronic disease, the etiology of which remains incom-pletely understood. Similar to disease etiology, factors that influence outcomes and many aspects of the MS disease experience are also incompletely understood. Observational studies and registries can play a critical role in elucidating these issues. The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is one of multiple registries worldwide that focus on people with MS,1 but one of the very few patient-driven MS registries. With operational support and funding from the Consortium of Publisher Copyright: {\textcopyright} 2021 Consortium of Multiple Sclerosis Centers.",
year = "2021",
month = nov,
doi = "10.7224/1537-2073.2020-133",
language = "English (US)",
volume = "23",
pages = "276--285",
journal = "International Journal of MS Care",
issn = "1537-2073",
publisher = "Consortium of Multiple Sclerosis Centers (CMSC)",
number = "6",
}