Pioneers in People-Centered Research

5 Ways iConquerMS is Making an Impact

People with MS are the experts on what it’s like to live with the disease and the impact of treatments on their quality of life. There is a growing recognition of the importance of the patient perspective in clinical care and research. iConquerMS leads the way in bringing the patient voice front and center in MS research.

1. Responding to the COVID-19 crisis As part of an international data collection, iConquerMS members contributed information about their experience with COVID-19. These data may help researchers gain insight into the impact of the virus on people with MS and act as a stimulus to steer ongoing and future scientific research.
2. Prioritizing topics of importance to people affected by MS ACP partnered with UsAgainstAlzheimer’s on a survey about the challenges and concerns of providing care to a loved one with Responses will be used to create educational materials for caregivers and healthcare providers alike. To address ageism in MS research and care, iConquerMS members of all ages have provided information about their care and investigators have ready access to these data.
3. Addressing topics of interest and concern to the MS community EMD Serono, in collaboration with ACP, is releasing a 5-part educational podcast series, called “Uncovering Sex in MS: A Dialogue About Sex, Parenthood and ” The iConquerMS network has also been instrumental in investigating alternative approaches to MS disease management, for example through the STEP for MS study and also improving and finalizing a study about the benefits of practicing Qigong.
4. Empowering People with MS at the Center of MS Research iConquerMS members participate in focus groups and advisory boards aimed at understanding the benefits people with MS are seeking from future MS drugs, and obtaining their input on how clinical trials are conducted. This type of input has great potential to influence the therapies that become available for people with MS in the future and the ways in which they are studied.
5. Advancing ongoing initiatives The information collected through REAL MS surveys plays a pivotal role in helping scientists and clinicians gain a better understanding of the health and quality of life over time for people with MS. In addition, data collected from iConquerMS members is being used to inform the National MS Society’s Pathways to Cures initiative.