Program Notes
By Susan Wells Courtney
Multiple Sclerosis Implementation Network News
In our Winter/Spring 2024 issue of The Motivator, we introduced an exciting new initiative in our “Program Notes” column. Titled Multiple Sclerosis Implementation Network® (MSIN®), this unique program is designed to create a practice-based research network (PBRN) for medical professionals to best support individuals with MS. (“Practice-based research network” refers to a group of healthcare professionals and practices performing research together with the goal of answering questions that apply specifically to the communities they serve.) This initiative is the result of a collaboration between MSAA and Novartis Pharmaceuticals Corporation.
As noted in our previous article, 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 is guided by two advisory boards: one is comprised of people living with MS and their care partners as well as advocacy partners who also may have lived experience; and the other is comprised of healthcare professionals and research scientists.
We are excited to provide an update on the progress that has been made since our announcement of this initiative last year. Some of our highlights are as follows:
- We now have 15 clinical sites participating in the PBRN, located from Georgia to Hawaii, and this number is growing.
- These clinical sites represent a wide range of MS care settings across the country.
- We currently have over 200 participants enrolled… and counting!
One of the goals of this program is to focus on the patient voice. This is accomplished by ongoing input through:
- Community Insights Board and Innovations Board
- Two members of the Steering & Operations Committee have lived experience*
- MSIN team members with lived experience*
*“Lived experience,” as the phrase implies, refers to the perceptions people have of their own experiences – beyond what they have learned in school or in their profession. With MSIN, this refers to individuals who have MS and can provide their thoughts from a special vantage point.
In terms of scientific recognition, two abstracts focusing on MSIN’s structure, purpose, and findings to date, were accepted as poster presentations at the 2025 European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) Congress. This meeting took place in September of this year, in Barcelona, Spain. In addition, the MSIN’s patient-centered model was presented in May 2025 to attendees of the European Multiple Sclerosis Platform (EMSP) Annual Conference in Prague, Czech Republic.
What’s next on the agenda for MSIN? One important objective is the continued expansion to more sites and more participants. For the first study, we are aiming to focus on biomarkers to improve MS care that is driven by data, informed by the community, and built for everyday impact. To learn more about the Multiple Sclerosis Implementation Network, please visit MSINresearch.org.
MSAA’s MRI Access Program
For more than 25 years, MSAA’s MRI Access Program has provided magnetic resonance imaging (MRI) assistance to more than 10,000 people who might otherwise have been unable to afford this important test. MRI scans are a vital tool in diagnosing MS as well as evaluating disease activity and treatment efficacy.
The MRI Access Program has been a crucial resource in providing funding to individuals who are uninsured, under-insured, or financially unable to pay for this important exam. Although this program was recently paused, we are excited to announce that it will re-open later this fall, which has been made possible through support from Genentech.
In addition, thanks to a generous donation from the Veyl family, a second phase of this program is being prepared to launch in the coming months. We are extremely grateful for this contribution, which allows us to once again provide support to those unable to afford an urgently needed MRI, as well as develop a new research database.
Beyond facilitating access to imaging for people who meet the lower-income criteria, this second phase of the program will involve creating a research database containing comprehensive information on a traditionally underserved population, which is rarely represented in clinical trials.1 This innovative structure of MSAA’s MRI Access Program was presented at the 2025 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) held this past May.
In the presentation, the study’s authors explain that the MRI Access Program database will provide “insights into MS diagnosis, treatment, and disease progression among patients from underrepresented communities. This project will investigate these individuals’ health outcomes and treatment patterns, offering critical data to support new research and improve MS care.”
We encourage readers to check MSAA’s website at MyMSAA.org/MRI in November for important updates on this program.
References
- Montague A, Ribbens A, Kline A, Costers L, Bartz R. MRI Access Program 2.0: a unique research database for studying outcomes in underserved multiple sclerosis populations. MOC03. CMSC 2025 Annual Meeting. May 28-31, 2025. Phoenix, AZ.