The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) is a physician-based registry and longitudinal database of clinical data and patient-reported outcomes. NARCRMS collects comprehensive patient and physician information to track incidence, prevalence and the longitudinal history of MS over time. Physician-collected data will include clinical records, neuroimaging scans, genetic markers, EDSS/cognitive assessments and specimens for the testing/identification of biomarkers for disease progression. Multiple sites across the US are actively enrolling patients in NARCRMS and additional sites will begin enrolling over the next year. For more information about NARCRMS or to participate as a patient or site, please visit www.narcrms.org or contact the NARCRMS Operations Group at NARCRMSOps@s-3.com.
Multiple Sclerosis Tissue Banks
The Society supports two facilities that store brain and spinal cord tissues, spinal fluid, and other specimens from persons who had MS during their lifetimes. These samples are frozen or otherwise preserved very soon after the death of the donors. The banked tissues are carefully catalogued along with information about the donor's medical history and are made available to qualified investigators.
MS DNA/Bio-Repository Bank
The National MS Society supports a unique Biorepository bank at the University of California, San Francisco. Originally dedicated to the ascertainment of genetic material from carefully documented cases of persons with MS and their family members, the repository also banks plasma and serum samples for biomarker and functional studies. In keeping with the variety of family structures seen in the general population, the available datasets includes affected individuals, first-degree relatives and unrelated controls with different ancestral origins. The whole repository totals over 10,000 study participants. These reagents are available to qualified investigators studying MS or other diseases that will help researchers understand the underlying causes of MS.
Data from the Slifka Study — A Longitudinal Dataset for MS
The Sonya Slifka Longitudinal MS Study involves a representative sample of over 2,000 people with MS, funded by the National MS Society to address a wide variety of research questions. Qualified investigators may apply to the National MS Society to use the Slifka Study interview data and/or blood samples for research projects that are deemed appropriate and of benefit to people with MS. Find out more about the Slifka Study.
Atlas of MS Database (from the MSIF)
Information and data on the epidemiology of MS and the availability and accessibility of resources to diagnose, inform, treat, support, manage and rehabilitate people with MS worldwide are available in one database for analysis and comparison at country, regional, and global levels.
Stem Cell Lines Repository: New York Stem Cell Foundation
Request or share specific iPSC lines through a new search interface, a collaboration between the New York Stem Cell Foundation (NYSCF) Research Institute and eagle-i, (a project of Harvard Catalyst at Harvard Medical School). With this new tool, NYSCF and eagle-i are challenging stem cell researchers to help revolutionize access to stem cell lines. If you produce stem cell lines and believe that greater transparency and accessibility are key to accelerating translational stem cell research, contact NYSCF to get started. NYSCF is also making panels of cell lines visible, searchable, and available to researchers upon request.
Large-scale Patient Database: The Sylvia Lawry Centre
The Sylvia Lawry Centre for MS Research has been building a large-scale database of patient information from over 20,000 patients since 2001. The information is from placebo arms of major clinical trials conducted over the last 20 years, as well as other data as it becomes available. The Centre, originally launched by the Multiple Sclerosis International Federation with co-funding from the National MS Society and other partners, is now open to qualified investigators wishing to develop statistical models, explore hypotheses or check the plausibility of research findings published by other research groups. Download PDF.
Multiple Sclerosis Outcome Assessments Consortium (MSOAC) Placebo Database
Placebo arms from clinical trial datasets, which were contributed by industry members of MSOAC, are aggregated in the MSOAC Placebo Database. The MSOAC Placebo Database presently includes 2615 individual patient records from 9 clinical trials. This version 1.0 includes records from relapsing-remitting, secondary progressive, and primary progressive forms of MS. Access it here
Making Minorities a Priority in Research Recruitment
Racial and ethnic minorities are underrepresented in MS research, resulting in a lack of evidence about their disease characteristics and optimal treatment. You can play a vital role in correcting this imbalance by working to include members of minority groups in the studies you conduct or support. Use this toolkit to help you learn more about what is currently known about MS in different racial and ethnic minorities, and help you reach out to these communities and work with them in ways that are culturally appropriate, effective, and mutually beneficial.
Suggested Practices for Successful Recruiting