To increase the exchange of research information and goings-on with the patient community, the Accelerated Cure Project (ACP) for Multiple Sclerosis (MS) has teamed with RealTalk MS, a weekly podcast for those affected by the disease.
Specifically, ACP will share ongoing results of its research initiative, iConquerMS. In turn, the podcast will use this information to develop new topics and educational content. Podcasts will be shared on the iConquerMS website.
“iConquerMS seeks to not only enable people-centered research on MS, but also to serve as a bridge between people affected by MS and the MS research community,” Hollie Schmidt, vice president of scientific operations at ACP, said in a press release.
“We are pleased to partner with RealTalk MS to help us continue to deliver on this mission by driving discussions, learning directly from top researchers through this powerful educational resource, and further disseminating results from our ongoing people-powered research efforts,” Schmidt added.
A network of more than 4,600 members, iConquerMS is a data-gathering program driven by those with MS. It also connects MS patients to the larger community and to clinical studies. Patients may submit queries and suggest research topics, and are updated on research results.
Researchers hope to use patient data to detect patterns and gain insight into the causes of MS, who will best respond to various treatments, and in work toward new therapies.
Patients have participated in every step of the initiative, including website creation and national campaign development. The effort is part of a national research network called PCORnet that seeks to foster partnerships to improve healthcare as well as advance knowledge about MS.
The initial 18-month funding for iConquerMS was provided by the non-profit Patient-Centered Outcomes Research Institute (PCORI), which sponsors research to help patients, caregivers, and clinicians make better-informed healthcare decisions.
MS clinics in the ACP network will help lead the iConquerMS data collection and research activities. Patients who wish to join this research effort may register here.
The RealTalk MS podcast is hosted by MS caregiver and activist Jon Strum. With a reach of more than 4,000 listeners, the podcast features discussions with experts in the field.
“Joining with ACP and tapping into the iConquerMS network will help uncover new topics that the MS community wants to learn about while creating important conversations around those topics,” Strum said. His wife Jeanne has progressive MS.
“We look forward to the shared opportunity to expand and enhance MS education and to make a difference in the lives of patients, their caregivers, their families and friends,” Strum added.
The ACP will suggest topics and experts for podcast episodes based on research questions from iConquestMS members, who get a direct podcast link.
For more information on the podcast, please follow this link.