In 2006, Accelerated Cure Project for Multiple Sclerosis (ACP), a patient-founded patient advocacy organization, launched a network to develop an open-access biological sample and data repository for investigating the causes and mechanisms of multiple sclerosis (MS).Today, the network includes 3,200 people with MS, as well as researchers in MS specialty clinics, academia, and industry. The repository houses tens of thousands of samples (DNA, RNA, serum, plasma, and white blood cells) linked with extensive medical data and patient-reported information.
ACP will build on its existing network to create a national MS-PPRN in partnership with the Complex Adaptive Systems Initiative at Arizona State University and Feinstein Kean Healthcare. The MS-PPRN will have patient-centric governance and will be supported by an integrated IT and communications platform featuring an ADA-compliant, patient-driven and -controlled portal (iConquerMS) that can be accessed regardless of geographical location and healthcare provider. Through this portal, patients can provide health-related, demographic, and electronic-health-record information that can be shared in a de-identified fashion with researchers who are investigating topics important to patients, such as comparative effectiveness of therapeutic agents. To support biomarker research, patients will also have the option of contributing biological samples collected at home or by local laboratories.
The portal will provide educational content about the nature and practice of research, information about the participant cohort and studies supported by the MS-PPRN, and direct communication with researchers. It will enhance participants’ knowledge of MS research and encourage them to contribute opinions and ideas.
ACP’s 18-month goal for enrollment in the MS-PPRN is 20,000 people with MS (5 percent of the estimated MS population in the United States). Outreach will occur through ACP’s existing participant and supporter base, its network of top-tier MS clinics, other MS clinics and community neurologists, MS advocacy organizations, and social media and other communications channels.