As part of the collaboration, the MS Society will make use of ACP’s iConquerMS, a research initiative to increase the engagement of patients in MS research, and the input from researchers and clinicians. In turn, the MS Society will provide financial support and help iConquerMS recruit patients for research projects. It will also share patient questions and research topics with its members and other support groups.
The nonprofit, patient-founded ACP seeks to accelerate research to improve diagnosis, optimize therapy outcomes, and develop a cure for MS.
“We believe that research, and specifically research that keeps those living with MS at its center, is critical to reaching our bold vision of a world free of MS,” Bruce Bebo, PhD, MS Society’s executive vice president, research, said in a news release. “We look forward to collaborating further with Accelerated Cure Project and all that we can achieve together in supporting and advancing people-powered research in MS.”
Laura Kolaczkowski, lead patient representative and co-principal iConquerMS investigator, the main goal of the collaboration is to give more voice to MS patients. “By growing the diverse community of people affected by MS who are contributing to people-powered research, we can expand and deepen what is studied and understood about MS, driving meaningful progress for people living with it each day,” she said.
Robert McBurney, PhD, president and CEO of ACP for MS and co-principal investigator for iConquerMS, said: “We are excited to expand on our existing relationship with the Society through this effort to increase the power of our shared communities in the fight against MS.”
With a network of more than 4,700 members, iConquerMS is a data-collection program driven by MS patients, which links those with MS to the larger community and to clinical studies. Patients are kept apprised of research results, and may submit questions and suggest research topics.
iConquerMS investigators hope patient data about topics such as quality of life will reveal patterns and help them better understand the disease. They also want to learn which patients respond best to certain treatments, to help develop new therapies.
Patients have participated in each step of the initiative, part of a national research network called PCORnet that seeks to form partnerships to improve healthcare and learn more about MS.
Early funding for iConquer MS came from the nonprofit Patient-Centered Outcomes Research Institute (PCORI), which sponsors research aimed at producing better-informed healthcare decisions.
In October, the ACP for MS announced a collaboration with the podcast Real Talk MS on which the ACP will share findings produced by iConquer. The podcast will use these results to inform topics and educational content. Podcasts will be available on the iConquer website.