MS Patient Registry for US Veterans Open to Researchers and Doctors

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.

“The MSSR is novel in that it combines a traditional MS registry with individual clinical and utilization data within the largest integrated health system in the US,” the scientists wrote.

Patient data is added to the registry by doctors after a live or remote telehealth patient consultation. Clinicians can choose to enter the data directly or via a tool designed to feed into MSSR — the MS Assessment Tool (MSAT).

Data entered covers information related to patients’ demographics, clinical details, inpatient and outpatient visits and tests, pharmacy medications and supplies required, prosthetics used, and costs of care. 

A progress note is also created and becomes part of patients’ electronic health records, being available to all healthcare providers involved in a patient’s care. 

The registry, which began accepting data in 2016, enrolled 1,743 patients being followed at VA MS regional programs and VA MS centers through 2019. Their mean age is 56, 40% are racial minorities, 64.9% have relapsing-remitting MS, and most are men (2.7 male:female ratio).

Their mean disease duration is  22.7 years, and their mean European Database for MS Disability Score is 4.7, indicating an ability to walk without aid, but with limitations. 

A majority of these patients (75.1%) have used at least one MS disease-modifying therapy, treatments that can lessen the activity and slow progression of MS. 

MSSR also features a summary electronic dashboard that allows healthcare providers to easily access registry information on individual patients and groups of patients. Its MSAT tool can also generate reports for use in longitudinal studies; these are often observational studies that, while taking repeat or continuous measures, follow a particular group over periods of time to detect things like patterns. 

“This new registry leverages the existing databases related to cost of care, utilization, and pharmacy services to provide surveillance tools for longitudinal follow-up of the MS population within the VHA [Veteran Health Administration],” the researchers wrote.

They expect that MSSR will “be a useful research tool in tracking epidemiological trends for the military population,” and can improve “clinical management of MS and serve as a national source for clinical outcomes.”