MSAA expands research network aimed at improving real-world MS care

The Multiple Sclerosis Association of America (MSAA) is expanding its patient-centered research network to include more than 1,000 people with multiple sclerosis (MS) receiving care at 20 sites across the U.S.

Known as the Multiple Sclerosis Implementation Network (MSIN), the initiative brings together healthcare providers, researchers, people with MS, and advocacy organizations to study ways of improving real-world clinical care.

Through the network, participating patients contribute information about their experiences with the disease and healthcare teams share clinical data to help researchers identify unmet needs and evaluate strategies to improve outcomes.

“We are incredibly proud of this important milestone, which reflects the collaboration of our partners and the dedication of people living with MS who are participating in research that will advance our understanding of the disease and improve care,” Amanda Montague, MSAA’s president and CEO, said in a press release from the organization.

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While there have been significant advances in MS care, challenges remain in ensuring patients receive evidence-based care for symptoms, rehabilitation, and other aspects of daily life.

While many promising interventions exist to help manage symptoms and improve quality of life, most have been developed by single teams and have not been tested across multiple healthcare settings, making it difficult to determine how well they can be implemented broadly in routine care.

MSIN was created to help bridge that gap by identifying effective care approaches and supporting their adoption in clinical practice. Through the initiative, participants contribute deidentified health information and patient-reported outcomes, enabling researchers to better understand the experiences and needs of people living with MS.

The initiative then serves as a practice-based research network, allowing participating centers to share data and experiences while evaluating interventions in real-world settings. By collecting data across a growing network of care centers, researchers hope to identify strategies that can be implemented more broadly to improve outcomes for people with MS.

Every participant in MSIN plays a vital role in helping to inform and drive progress in research.

MSIN was established through a collaboration between MSAA, researchers at the University of Texas, Novartis Pharmaceuticals, and Genentech. A key feature of the program is its emphasis on patient involvement, with people living with MS and their care partners making up one of its advisory boards and helping to shape research priorities and guide study design.

The other advisory board is comprised of healthcare professionals, research scientists, and advocacy partners. These two groups, together, advise the MSIN steering and oversight committee, which makes decisions that guide the initiative’s efforts.

“Every participant in MSIN plays a vital role in helping to inform and drive progress in research. We are truly grateful for the commitment of everyone involved as we work together to improve care for the MS community,” Montague said.