If you’ve ever participated in a research study, you know that there’s often a lot of communication during the study (reminders about study visits or completing tasks, for example) but things often go very quiet when the study draws to a close. One of the biggest complaints that study participants have is they don’t hear about the study’s results. Even more generally, there’s a lack of information out there for people affected by MS regarding research results and how those results can be used, in collaboration with one’s health care providers, to make decisions about living with MS. At ACP, we’re committed to changing that!
ACP’s iConquerMS is a ground-breaking initiative that empowers people affected by MS to drive MS research and accelerate efforts toward improving treatments and finding a cure for the disease. All of our work is done in partnership with individuals affected by MS. The initiative has a patient-centered governance structure that includes a Governing Board, an Engagement Committee and a Research Committee. The majority of the board and committee members are people affected by MS. These groups work together to oversee the overall policies and direction of iConquerMS, engage people in, and manage research activities done through the initiative.
Each November, the iConquerMS governance and other stakeholders in the MS community gather at the iConquerMS Summit to discuss the future direction of the initiative. The dissemination of research results has been a continuing thread at these meetings. In 2021, Summit attendees agreed that iConquerMS should create a plan to make research results readily available in easily understandable language and include this plan in the design of all research done through the network. The consensus was this broad sharing of research findings would positively impact the health and quality of life of the MS community. For iConquerMS, it would not only engage researchers and increase their involvement in the initiative, but also attract people with MS and boost enrollment.
The Next Steps Committee jumped into action to make these ideas a reality. The new Research Projects page on the iConquerMS website is the end result of their hard work. It is a convenient place to track the status of iConquerMS studies (research that network members have contributed to) and review their findings. Summaries of 8 projects are currently listed, and more will be added over time. Some are under development or currently open for participation, while others are completed and have results available to view.
There are two ways to navigate to the Research Projects page from the iConquerMS home page. Users can either click on “Learn about our research projects and results”
or hover over “About” on the top left side of the page and click on the submenu “Our Research Projects.”
Once on the Research Projects page, one can filter studies by status or topic, or search by keyword to find projects of interest.
Below these search engines are snapshots of projects enabled by iConquerMS resources. For example, below is a snapshot of a study focusing on MRIs in MS. Users can see at a glance the general research topic, study status and a brief overview of the project.
The “View details” button below each study allows access to more information about the project, including its goals, methods, an interpretation of its findings and next steps.
“View Details” Pop-Up Example:
MRIs in MS: Access, knowledge, and interest among people with MS
The Research Projects page is just one of the many dissemination methods that iConquerMS is using to make MS research results and other resources more accessible to the MS community.
The Chat with Chat webinar series provides a glimpse at the researchers working with iConquerMS, what they study, and how their work will benefit people with MS.
The ACP newsletter is one of the vehicles that provides information about new findings in MS research and much more!
We are proud to partner with RealTalk MS, a weekly podcast that covers a wide range of topics, including groundbreaking MS research.
Looking forward, we’re in year one of a two year capacity building award to enable iConquerMS to disseminate the results of the PCORI funded MS projects! Stay tuned!
iConquerMS is a collaborative effort between ACP, our partners and the MS community to move MS research toward better treatments and a cure. The Research Projects page was created in response to an expressed desire from network members to stay informed about the studies they have participated in. This online resource was developed with input from our constituents, honoring the way they want to learn and receive information. It is evidence of the breadth of connections iConquerMS is making in the MS community. We look forward to the progress these powerful collaborations will bring in the coming year!
