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In the absence of a mandatory national multiple sclerosis (MS) registry, MS research in the US often relies on voluntary databases both for data access and recruitment. Such databases, maintained either by commercial parties or non-profit organizations, have become increasingly common. Despite their redundancies, each database can offer unique insights to clinical disease course, treatment patterns and patient perspective. The magnitude and nature of the overlap in participation in these databases are currently not known, which hinders prevalence estimates, recruitment efforts and potential collaborations.
Objectives:
To facilitate future collaboration in MS database research by analyzing and characterizing affiliation patterns among North American Research Committee on MS (NARCOMS) registry participants.
Methods:
NARCOMS is a voluntary self-report registry with at least enrollment data on over 36000 persons with MS. In addition to the routinely asked disease, therapy and quality of life related questions, the spring 2012 NARCOMS update survey also inquired about other MS organizations with which the registry participants were affiliated at the time. We analyzed the responses together with previously collected background information using descriptive statistics.
Results:
8659 registry participants responded to the survey question on MS organization affiliation. They were predominantly women (77.9%) and had a mean (sd) age of 57.0 (10.4) years. 2250 (25.1%) were not affiliated with any other MS organization while 38.7% reported only one and 36.1% two or more affiliations. The largest reported overlap within NARCOMS was with the National MS Society (71 %), followed by MS Association of America (MSAA) (20.5%), MS Foundation (MSF) (17.2%) and United Spinal Association (11.6%). Of the 550 NARCOMS participants from New York state, only 14.9 % reported being in the New York State MS Consortium (NYMSC) registry. Overall, the responders reported affiliations with over 60 different MS organizations or groups. As compared to the rest, the group of NARCOMS participants reporting no involvement in any other organization had a lower median [IQR] disability level (PDDS 3 [1,6] vs. 4 [1,6]) as well as a higher proportion of men (23.1% vs. 21.7%) and online responders (75% vs. 70%).
Conclusions:
The NARCOMS Registry includes a sizable number of participants affiliated with several other MS organizations, providing intriguing opportunities for collaboration. Registry data submitted by the otherwise non-affiliated segment of NARCOMS participants can offer important insight to the experiences of individuals typically not captured.