A patient registry of multiple sclerosis (MS) among veterans of the U.S. military has been created to allow for better clinical management of these people and to inform future research.
The registry is described in the study “The Multiple Sclerosis Surveillance Registry: A Novel Interactive Database Within the Veterans Health Administration,” published in the journal Federal Practitioner.
Disease-specific registries can be helpful in managing neurologic conditions and for studying trends and outcomes in patient populations.
When used within a healthcare system, registries can act as a barometer of treatments and services provided to patients. However, few registries are integrated with the patients’ electronic health records or linked to health system data.
The U.S. military has the oldest and largest nationwide cohort of MS patients, with records dating to veterans of the World War I, the study notes. Beginning in the mid-1990s, electronic health records for this population were integrated into the Veterans Health Administration, U.S. Department of Veterans Affairs (VA).
Since 1998, a total of 56,000 MS patients have been assessed through the VA, with 18,000 to 20,000 evaluated annually.
Information technology specialists at the VA Northwest Innovation Center and MS healthcare providers at MS Centers of Excellence created the integrated MS Surveillance Registry (MSSR), beginning in 2012, by combining patient electronic health records with data from large medical databases.
MSSR allows clinicians and researchers to access extended information on U.S. veterans with MS, with the goal of improving MS patient care and future clinical research.
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