Collaborating to Create a Practice-Based Research Network
Published in MSAA’s Program Notes column featured in the Winter/Spring 2024 issue of The Motivator
By Susan Wells Courtney
The Multiple Sclerosis Association of America (MSAA) and Novartis Pharmaceuticals Corporation have collaborated to develop the Multiple Sclerosis Implementation Network™ (MSIN™). This is an exciting and unique initiative to create a practice-based research network (PBRN) for medical professionals to best support individuals with MS.
MSIN is a patient-centric initiative, emphasizing the vital role of people living with MS and their involvement in this practice-based research network. MSIN will be guided by two advisory boards – one of which will be comprised of people living with MS and their care partners. The other advisory board will be comprised of healthcare professionals, research scientists, and advocacy partners.
According to MSAA’s Chief Medical Officer Dr. Barry Hendin, learning what types of treatments and support work best for each patient will result in a better model of care and protocol for doctors across the country to follow. Dr. Hendin explains, “Certain health conditions have proven protocols for care. Hospitals and medical professionals have precise steps to follow when someone presents with symptoms of a certain condition, such as a stroke or heart attack. Evaluation and testing, immediate treatment, long-term therapies, symptom management, and lifestyle changes are well-established and result in a higher survival rate and better quality of life.”
With MS, treatment protocols are not as firmly established. Highlighting the need for multidisciplinary MS Care Units, researchers in England published an article on the complexities of treating MS. They state, “Treatment of multiple sclerosis (MS) has become increasingly multifaceted and comprises not only a variety of disease-modifying drugs with different mechanism of action but also a wide range of symptomatic therapies. Today, it is not possible for the family physician or even many general neurologists to master the current treatment algorithm [precise instructions for treatment].”1
As a leading resource for the MS community, MSAA accomplishes our mission of improving lives today through vital services and support. Recognizing the need to have research inform MS practice, MSAA has embarked on this very exciting research program to improve patient outcomes and help ensure that patients are receiving the best MS care regardless of where they live.
MSIN will serve as a model of innovation, improvement, and implementation of evidence-based care and best practices that connect participating healthcare professionals, spanning from MS comprehensive care centers to community-based neurologists. In sharing data and experiences, this PBRN enables participating centers to learn from each other while contributing to research to improve the quality of care and health outcomes for people with multiple sclerosis.
MSAA is also pleased to partner with SEQSTER, a leading healthcare technology company, on this important initiative. SEQSTER is a pioneer in patient-centric healthcare data technology and patient management, specializing in patient enrollment, data collection, retention, and consent.
Together, the MSIN collaboration aims to: develop a research-driven data environment; use improvement and implementation approaches to improve care, experience, and outcomes; advocate for therapies and health interventions for all people living with MS, regardless of practice setting or location, helping to eliminate disparities; support the MS care workforce; and achieve optimal health outcomes for the entire MS community. To learn more about the Multiple Sclerosis Implementation Network, please visit MSINresearch.org.
MSAA is excited to announce the appointment of two principal investigators:
María E. Fernández, PhD and Leorah Freeman, MD, PhD.
Dr. Fernández is Vice President of Population Health and Implementation Science at the University of Texas Health Science Center at UTHealth Houston and the founding Co-Director of their Institute for Implementation Science. Dr. Fernández is also the Lorne Bain Chair of Public Health and Medicine, Professor of Health Promotion and Behavioral Sciences, and Director of the UTHealth Houston Center for Health Promotion and Prevention Research (CHPPR).
Dr. Freeman is a neurologist who specializes in multiple sclerosis, neuromyelitis optica, and other neuroinflammatory conditions. At Dell Medical School at The University of Texas at Austin, she serves as Medical Director of the Multiple Sclerosis and Neuroimmunology Center and Fellowship Program Director. She also leads the Multiple Sclerosis Imaging and Outcomes Research Laboratory. Additionally, Dr. Freeman serves on MSAA’s national Healthcare Advisory Council.
- Soelberg Sorensen P, Giovannoni G, Montalban X, Thalheim C, Zaratin P, Comi G. The Multiple Sclerosis Care Unit. Mult Scler. 2019 Apr;25(5):627-636. doi: 10.1177/1352458518807082. Epub 2018 Oct 23. PMID: 30351211; PMCID: PMC6439947.
