By Annette M. Boyle

William J. (“Joel”) Culpepper II, PhD, MA, associate director of Epidemiology and Informatics for the Center of Excellence

WASHINGTON — After several years of development and testing, the VA’s Multiple Sclerosis Surveillance Registry (MSSR) is ready for rollout — and that means veterans are likely to receive more consistent and better coordinated care.

Disease-specific databases such as the MSSR can help in management of neurological conditions, but few are well integrated into patients’ electronic medical records or linked to health systems data, according to leading researchers at the VHA Multiple Sclerosis Center of Excellence-East in Washington.

To address that problem, William J. (“Joel”) Culpepper II, PhD, MA, associate director of Epidemiology and Informatics for the Center of Excellence, and Mitchell T. Wallin, MD, MPH, the center’s interim director, and colleagues have worked to develop and refine the MSSR so it will work seamlessly with the VA’s electronic health record (EHR).

The Multiple Sclerosis Assessment Tool (MSAT) and MSSR provide a “mechanism for the systematic collection of a minimum data set of pertinent MS clinical information that is currently not standardized within the VHA EHR. This provides standardized data collection and enables reporting of MS relevant information at the patient, clinic and national level,” Wallin said.

One of the challenges faced in creating the database was the need to use consistent information technology architecture across the VA’s multiple disease registries. The team built the MSSR in an iterative, cooperative process with IT and MS specialists, they explained in a presentation at the American Academy of Neurology Annual Meeting. 1

The base was a common converged registry solution platform that is also used by the traumatic brain injury and cancer registries. Using the platform “allows relatively easy cross-linkages across the existing and future registries,” Culpepper told U.S. Medicine.

Clinicians can access the data entry portal, the MSAT, via a web link from within the VA’s Computerized Patient Record System (CPRS). Once an assessment is completed, a clinical note is generated and is stored within the EHR for all providers to access,” Wallin said.

The team first tested the system at regional MS clinics within the mid-Atlantic and Pacific Northwest regional networks, initially enrolling 930 veterans between 2013 and 2015. Today, the database includes 1,077 veterans with MS, out of the approximately 25,000 veterans with the disease who actively use the VA healthcare system.

Nationwide Rollout

To facilitate enrollment of additional veterans, the project team is rolling out the MSAT/MSSR to the MS clinic network nationwide. Both a user’s manual and a technical guide to assist local IT support with implementation are available, Culpepper said.

Wallin and Culpepper have actively promoted the registry to clinicians and to increase participation. Both seek out opportunities to present the MSAT/MSSR at national and regional MS-related meetings and conferences for VA clinicians who work with patients who have multiple sclerosis.

They also make the pitch personal. “We establish contact with clinic leadership and their respective IT support and provide online or in-person demonstrations and training sessions,” they said. In addition, both men encourage clinicians new to the registry to contact them directly with questions.

Culpepper explained that the driving force for them is the ability to improve clinical care for veterans with MS. The registry provides a “standardized note in the EHR for all providers to review when caring for a veteran with MS as well as greatly enhances the ability of those within the VHA MS Center of Excellence clinical network to provide better and more consistent care,” he said.

Note entry has been simplified as much as possible. Not only does MSAT/MSSR use a data collection template that makes providing the essential information easy, it prepopulates the MSAT on follow-up visits with data from the most recent previous visit. “In this way, the clinician can see how the patient was at the last visit in relation to their current status and only has to reenter data for those data elements that have changed,” Culpepper explained.


Once the data has been entered, the system stores it in a standardized format to facilitate analysis and compilation of data for local groups and across the registry. For clinicians and researchers, the database produces valuable reports that show how patients in a clinic are distributed, for instance, by creating charts with smart links to patient lists that show which veterans are using specific MS drugs.

Clinicians can drill down to get more details on individuals. “The patient details page offers a snapshot of how a patient is currently doing, along with their prescription history and relapse history,” Wallin said. It also provides a comprehensive view of the patient’s utilization of outpatient services, hospitalizations, labs and other information.

The system aggregates data to enable better understanding of the demographics, comorbidities and trends among veterans with MS, too. Based on the initial entries, for instance, the researchers found that the average age of veterans with MS was 56 years. Among those definitively diagnosed with MS, 47% currently use some disease-modifying therapy.

  1. Wallin M, Culpepper W, Whitham R, Maloni H, Russell A, Haselkorn J, McConnachie J, Duckart J, Kurtzke J. The Multiple Sclerosis Surveillance Registry: A Novel Interactive Database within the VA Health Care System. April 5, 2016. 86(16):S2.127.