Role of self-report registries in developing a national Multiple Sclerosis (MS) surveillance system: Promising results from the NARCOMS database

OBJECTIVE To assess the usefulness of self-report registries in establishing a comprehensive national MS surveillance system.

BACKGROUND ATSDR has previously reported on the feasibility of using Medicare (MC), Veterans Health Administration (VHA), and Veterans Benefits Administration (VBA) databases to develop a national MS surveillance system. However, those databases do not include people with MS not entitled to or not taking government authorized healthcare benefits. Complementary data sources, such as voluntary self-report registries, could assist in including the un-captured segments of the MS population.

DESIGN/METHODS The 2001-2005 MC, VHA, and VBA records from GA, MN and SC were analyzed to identify cases of MS. These records, combined with the National Multiple Sclerosis Society (NMSS) membership list, were compared with corresponding North American Research Committee on Multiple Sclerosis (NARCOMS) registry data to 1) assess how well the data sources, alone and combined, captured the NARCOMS population, and 2) determine the disease and socio-economic characteristics of the NARCOMS population missed by the other sources.

RESULTS The three administrative databases captured 28.8% of the 1855 NARCOMS participants diagnosed before 2006, while NMSS alone captured 59.2-83.0% per state. On average, the 27.3% found only in NARCOMS were 4 years younger, less disabled, and had shorter disease duration than the captured group.

CONCLUSIONS These three-state results suggest collaboration with self-report registries is a viable approach for building a more comprehensive national MS surveillance system than could be done with administrative databases alone. The logistics of larger-scale data sharing will require further assessment.