People living with MS are the heart and soul of iConquerMS. The initiative’s goal is to empower them to drive, shape, and speed up research. Network members can share their MS experiences and influence the direction of research with their ideas. We aim to engage tens of thousands of participants worldwide, reflecting diversity in race, ethnicity, socioeconomic status, orientation, ability, age, MS stage, and more. This variety will create a rich, interactive resource for MS research.
The iConquerMS network has grown to over 8,500 adults living with both relapsing remitting and progressive forms of MS.
Advancing participant-driven research
iConquerMS members are driving MS research with the Our Questions Have Power program. In this program, participants propose research questions and vote on the suggestions of others. These questions are then shared with those affected by MS, researchers, healthcare professionals, advocates and funders. Together we are working to initiate research projects to address these questions.
Expanding and enriching the iConquerMS network
iConquerMS invites children, teens, and their families to join the iConquerMS Kids & Teens program! This support network for pediatric MS was created with input from young people and their families. We are excited to collaborate with researchers and healthcare providers to support their work in pediatric MS.
Caregivers are essential to many families. We have several initiatives to help those in this crucial role. iConquerMS Caregivers empowers carers to contribute to research, either on behalf of their loved one or for themselves. We are also creating a Care Partner Protocol to provide resources for the challenges that many caregivers encounter.
Disseminating Research Results
The iConquerMS community has made many studies possible over the years. Our Research Projects page is a convenient place to track their status, see summaries of the work being done, and review research results!
Making MS research more inclusive
Clinical studies should include all people, no matter their race, ethnicity, orientation, age, or economic status. The RIDE Council is tackling the lack of diversity in MS research. They’ve created brochures to spread this message and encourage more people to join and developed resources to benefit all with MS. This grassroots effort could improve healthcare and quality of life for everyone affected by MS!
Researching subjects relevant to those with MS
Network members provided information about their diagnosis, treatment choices, discussions about research and any instances of healthcare-related discrimination they encountered. The results have been incorporated in an online educational program for medical professionals, ensuring they stay well-informed about these issues.
Some people notice their MS symptoms getting worse before their next medication dose, but feel better after taking it. We’re collaborating with Novartis to study this with Kesimpta and Ocrevus users, checking how they feel during treatment and if they have this experience.
The COVER-MS study shows that people with MS react to COVID-19 vaccines like those in clinical trials. Now, a sub-study is investigating how well these vaccines protect those with MS by measuring antibody response. Results are coming soon!
Recent research, hosted by iConquerMS, found that about half of all individuals with MS hide their diagnosis from others due to fear of negative consequences. Results show a number of factors make this decision more likely. Are you curious what they are? Read more…
Collaborating to conquer MS fatigue! iConquerMS members will soon have the opportunity to help evaluate the effectiveness of a new, non-drug treatment for MS fatigue. Stay tuned!
iConquerMS members are part of a community that is making a difference! Not already an iConquerMS member? Please consider joining today. Together, we can make an even greater impact advancing relevant, participant-driven MS research!
