Table 1.
Sample of major MS cohorts and registries underway.
| Cohort | URL | Primary contact-email | Key attributes | Open Access | No. of active participants/registrants | Enrollment dates | Geographic catchment | CIS/relapsing/progressive | Plasma/serum/cells | DNA/RNA | MRI imaging data/frequency | Physician-reported outcomes | Patient-reported outcomes |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Accelerated Cure Project | www.acceleratedcure.org | sloud@acceleratedcure.org | High-quality biospecimens with extensive associated data | Yes | 3220 total (1787 MS + controls) | 2006–2012 | 10 MS clinics in the United States | Yes/yes/yes | Yes/yes/yes | Yes/yes | No images, only descriptors | Yes | Yes |
| British Columbia MS Database | http://epims.med.ubc.ca/ | helen.tremlett@ubc.ca | Longitudinal, clinical, linkable to population-based health administrative data | Upon request | Total (1980–present): 10,000+ | August/1980–present | British Columbia, Canada | Limited/yes/yes | Study-specific collection only | Study-specific collection only | Study-specific collection only | Yes | Study-specific collection only |
| Centre d’Esclerosi Múltiple de Catalunya (Cemcat) | https://www.cem-cat.org/ | xavier.montalban@cem-cat.org | Longitudinal deep phenotyping | No | 2500 | 1995–present | Catalonia, Spain | Yes/yes/no | Yes/yes/yes | Yes/yes | Baseline, year 1, every 5 years | Yes | No |
| Cleveland Clinic Knowledge Program | COHENJ@ccf.org | Longitudinal follow-up of clinic population | No | 4900 | 2007–present | Ohio/Midwest, also national and international | Yes/yes/yes | No/no/no | No/no | Yes, ad hoc | Yes | Yes | |
| Comprehensive Longitudinal Investigation of MS (CLIMB) | http://www.climbstudy.org | tchitnis@rics.bwh.harvard.edu | Longitudinal deep phenotyping | Upon request | 2100 | February 2000–present | Boston/greater New England | Yes/yes/yes | Yes/yes/yes | Yes/derived | Yes, annual | Yes | Subset |
| Danish MS Registry (DMSR) | http://www.ms-research.dk/ | melinda_magyari@dadlnet.dk | Longitudinal, nationwide, population based | Yes by application | 25,000 | Since 1956 | Denmark | Yes/yes/yes | No/no/no only CSF | No | No | Yes | Yes |
| iConquerMS | https://www.iconquerms.org/for-researchers | iConquerMS@acceleratedcure.org | Patient-powered research; longitudinal; patient-reported outcomes | Yes | 3200 and growing | February 2015–present | Primarily US-based with no geographic limitations (worldwide) | Yes/yes/yes | Not yet | DNA collection piloted; expansion with funding | No | No, in development | Yes |
| Italian MS Register | registroitalianosm@aism.it | Longitudinal prospective cohort | Upon request | 36,200 | 2014–present | Italy | Yes/yes/yes | No/no/no | No | Yes/annual | Yes | No | |
| Kaiser Permanente, SoCal | Annette.M.Langer-Gould@kp.org | Multi-racial/ethnic population representative of geographic region. Incident cases with complete health record; matched controls for >600 participants in the MS Sunshine Study | No | ~1500 total; MS Sunshine Study >600 incident cases with detailed environmental exposures, genetic information, and stored sera/plasma | January 2008–present entire incident cohort; subgroup 2011–2015 | Southern California | Yes/yes/yes (total cohort and MS Sunshine study; also includes NMO) | Yes/yes/no from MS Sunshine Study | Yes/yes for MS Sunshine Study | Yes, standard of care, all cases | Yes | Subgroup | |
| MS Clinic Database and Registry, Health Sciences Centre, Winnipeg | rmarrie@exchange.hsc.mb.ca | Clinical registry for recruitment for research studies; core data can be used for record review/linkage studies | No | 2061 | April 2011–present | Manitoba, Canada/northwestern Ontario | Yes/yes/yes | No/no/no | No/no | MRI reports could be reviewed/clinical judgment | Yes | Yes | |
| MS genetics-expression, proteomics, imaging clinical (EPIC) | http://msepicstudy.com/ | hausers@neurology.ucsf.edu | Longitudinal deep phenotyping with 85% at 10+ years | Upon request | 530 | June 2004–present | San Francisco, CA | Yes/yes/yes | Yes/yes/yes | Yes/yes | Yes, annual | Yes | Yes |
| MSBASE | https://www.msbase.org | info@msbase.org | Longitudinal, multinational. Min. dataset = demographics, EDSS, relapses, DMT exposure, diagnostic test info | Access within collaborative group | 42,248 (as of 11 October 2016) | January 2004–present | Global—38 participating countries | Yes/yes/yes NMO | Yes/yes/no in subsets | Yes/no in subsets | No images, only descriptors | Yes | Subset |
| NARCRMS | http://narcrms.org/ | krammohan@med.miami.edu, dj9d@virginia.edu | Longitudinal registry, clinician collected, soon to include MRI. Eventual interface with NARCOMS | Yes | Currently 15, but goal of 1000 in 5 years | June 2016 to present | North America | Yes/yes/yes | Eventually, RFP in development | No/no | Yes, annual | Yes | Yes |
| North American Research Committee on MS (NARCOMS) | http://narcoms.org/ | MSregistry@narcoms.org | Longitudinal self-reporting | No | 11,000 | 1996–present | Global, mainly the United States | Yes/yes/yes | No/no/no | No/no | No | No | Yes |
| Norwegian MS Registry & Biobank | https://helse-bergen.no/avdelinger/nevroklinikken/nevrologisk-avdeling/nasjonal-kompetansetjeneste-for-multippel-sklerose/norsk-ms-register-og-biobank | kjell-morten.myhr@helse-bergen.no | Longitudinal follow-up phenotyping | By application | ca 8000 | 2001 | Norway | No/yes/yes | No/yes/no | Yes/no | Yes, prospectively for 2016 | Yes | Yes from 2017 |
| NY State MS Consortium | http://www.nysmsc.org/nyregistry.asp | BWeinstock-Guttman@KaleidaHealth.org | Longitudinal data collection, historical cohort with no DMT use, patient-reported and clinical outcomes | Yes for affiliated centers | 9650 enrolled/18,000 follow-ups | 1996–present | New York, some Northwestern Pennsylvania | Yes/yes/yes | Subset | Subset | Subset | Yes | Yes |
| OFSEP (Observatoire Français de la Sclérose en Plaques) | www.ofsep.org | sandra.vukusic@chu-lyon.fr | Longitudinal clinical and MRI follow-up of French MS patients | Yes | 58,000 | 2011 (but many local databases using the EDMUS software started before) | France | Yes/yes/yes (+RIS and NMOSD) | Yes/yes/yes only in subgroups | Yes/yes only in subgroups | Yes, standardized acquisition, frequency according to local prescription | Yes | No, in progress |
| OPTIMISE | http://www.optimise-ms.org/ | p.matthews@imperial.ac.uk | Clinical data entry portal/database allows DICOM image upload with data management option in transMART platform | Yes | 1000 and growing | Retrospective–present | UK | Not formally audited, all types | No/no/no but intended with future accrual | Limited transcriptomics | Partial | Yes | Wikihealth tool being added 2017 |
| PROMOPRO-MS | giampaolo.brichetto@aism.it | Longitudinal, population-based, collected every 4 months, demographic, disease course, onset, treatments, physician-reported and patient-reported outcomes | For research, by application | 2000 and growing | Longitudinal every 4 months from 2014 | Italy | No/yes/yes | No/no/no | No/no | No, but intended with future integration with Italian NeuroImaging Network Initiative | Yes | Yes | |
| SMSC (Swiss MS Cohort) | https://smsc.rodano.ch/ | jens.kuhle@usb.ch claudio.gobbi@eoc.ch | Prospective, observational, standardized demographic, clinical, MRI data and biospecimens, focus on newer disease-modifying drugs | No, open for nested projects with a member of Scientific Board | 1040/1102 | June 2012–present | 7 Swiss MS Centers | Yes/yes/yes | Yes/yes/yes selection | Yes/no | Yes, annual | Yes | No |
| Sonya Slifka Longitudinal Multiple Sclerosis Study | sminden@partners.org | Longitudinal, population-based, collected every 6–12 months, demographic, disease, health care use, costs, QOL; some on care providers, biospecimens for 150 newly dx | Yes with permission | 4634 | 2000–2010 | United States | No/yes/yes | Yes/yes/no for subset | Yes/yes for subset | No | No | Yes | |
| SUMMIT | www.summit.org | summit@partners.org | Longitudinal deep phenotyping; enriching with newly dx, rx naive cohort | Yes | 1028 | 2000–present | Boston/greater New England and greater San Francisco area | Yes/yes/yes | Yes/yes/yes | Yes/yes | Yes, annual | Yes | Yes |
| Swedish MS Registry | http://www.neuroreg.se/en.html/multiple-sclerosis-research | Jan.hillert@ki.se | Longitudinal data on >80% of the prevalent patient population, mean 6 years follow-up | For research, by application | 15,974 at 61 centers | 1995–present +1000 patients annually | Sweden | Some/yes/yes | In separate overlapping projects, 10,000 patients | In separate overlapping projects, 10,000 patients | High level info on #lesions and #Gd+ and #new lesions or MS-indicative yes/no on 32,000 scores, that is, 2–3 per contributing patient | Yes | Yes |
| US Network of Pediatric MS Centers: Pediatric MS and other Demyelinating Diseases Database | http://usnpmsc.org/ | charlie.casper@hsc.utah.edu | Pediatric, longitudinal | No | 1700 | May 2011–present | USA (participating centers) | Yes/yes/no | No/no/no | No/no | Yes, as clinically ordered | Yes | No |
| Veterans Health Administration MS National Data Repository | http://www.va.gov/MS/index.asp | Steven.Leipertz@va.gov | United States VHA Medical Records | VHA Personnel and Affiliated | 50,000 | October 1998–present | United States | No/yes/yes | No/no/no | No | No | No | No |
MS: multiple sclerosis; CIS: clinically isolated syndrome; MRI: magnetic resonance imaging; CSF: cerebrospinal fluid; NMO: neuromyelitis optica; EDSS: Expanded Disability Status Scale; DMT: disease-modifying drug therapy; QOL: quality of life; RFP: Request for Proposals; NMOSD: Neuromyelitis Optica Spectrum Disorder; RIS: Radiologically Isolated Syndrome; VHA: Veterans Health Administration.
This list of MS cohort studies and registries is not exhaustive, and additional cohorts are under development.