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A Multiple Sclerosis Patient-Powered Research Network
Investigator (PI): McBurney, Robert
Performing Organization (PO): (Current): Accelerated Cure Project for Multiple Sclerosis / (781) 487-0008
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2014
Final Year: 2015
Record Source/Award ID: PCORI/PPRN-1306-04704
Funding: Total Award Amount: $991,949
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Accelerated Cure Project for Multiple Sclerosis (ACP) is a patient-founded, patient advocacy organization, highly successful in engaging patients to create resources that catalyze innovative collaborative research. In 2006, ACP launched a patient network centered on an open-access biosample and data repository for use in investigating causes and mechanisms of multiple sclerosis (MS). Today, our network has an enthusiastic base of 3,200 participants (patients and control subjects), clinician-researchers at MS specialty clinics located across the USA, strong relationships with over 60 research teams in academia and industry, and an invaluable collection of tens of thousands of biological samples (DNA, RNA, serum, plasma, and white blood cells) linked with extensive medical data and patient-reported information that, to date, has supported 77 research studies worldwide. In partnership with the Computational Sciences & Informatics of Complex Adaptive Systems at Arizona State University and Feinstein Kean Healthcare, ACP proposes to expand the repository network to an MS Patient-Powered Research Network (MS-PPRN), so that a large number of MS patients across the USA can participate in ACP's mission and in the National Patient-Centered Clinical Research Network (NPCCRN). The MS-PPRN will be supported by an integrated IT and communications platform featuring a patient-driven and controlled portal (iConquerMS) that can be accessed regardless of geographical location and health care provider. This portal will give patients the opportunity to provide health-related, demographic, and electronic health record (EHR) information that can be shared in a de-identified fashion with researchers who are investigating topics that are important to patients, such as comparative effectiveness of therapeutic agents. Patients will also have the option of contributing biosamples through home-based collection or local laboratories to support biomarker research in MS. To catalyze research using MS-PPRN biosamples and data, ACP will mobilize the scientists who have already used ACP Repository resources and will also leverage its MS Discovery Forum website to reach a wider audience of investigators. ACP's 18-month goal for enrollment in the MS-PPRN is 20,000 people with MS (5% of the estimated population of MS in the USA), beginning with the 3,200 participants in the current ACP Repository network. Outreach will be made through ACP's existing participant and supporter base, its network of top-tier MS clinics, other MS clinics and community neurologists, MS advocacy organizations who have agreed to bring our invitation to their members, and social media and other communications channels. In addition to increasing the size of the network, an equally important goal is to enroll participants who reflect the full diversity of the population of Americans with MS. Programs will be put in place to ensure that people in underrepresented groups learn about the opportunity to join the network, perceive the benefits of the network for themselves and for the MS community in general, and feel welcomed and valued as participants. ACP's top-level direction is set by people with MS and family members, and ACP includes patients and other stakeholders in research decisions and operations. For the MS-PPRN, a patient-centered governance structure will be established that includes a governing board, and research, membership, and communications committees, all chaired by MS patients. Network participants will be invited to fill open governance positions and continually encouraged to participate in research topic generation, priority setting, and decision making by providing input via the portal. Educational content about the nature and practice of research, information about the participant cohort and studies supported by the MS-PPRN, and direct communications with researchers will be provided via the portal to give participants an enhanced level of knowledge about MS research and greater motivation to not only learn more but also to contribute their own opinions and ideas. The iConquerMS portal will be constructed in a modular fashion, composed of well-vetted, open-source components. Portal technology and data collection instruments will be standards-based whenever possible to enable seamless integration with other NPCCRN components and streamlined research across networks to facilitate investigations spanning multiple organizations and disease areas. The MS-PPRN team will be eager and active participants in the data standards and policies development activities of the NPCCRN.
MeSH Terms:
  • Access to Information
  • Biological Specimen Banks
  • Biomedical Research /*organization & administration
  • /trends
  • Comparative Effectiveness Research
  • Computational Biology
  • Databases, Factual
  • Electronic Health Records
  • Humans
  • Multiple Sclerosis /*diagnosis
  • /epidemiology /*therapy
  • Patient Participation
  • Patient Selection
  • Patient-Centered Care
  • Program Development
  • Registries
  • Research Design
  • United States
Country: United States
State: Massachusetts
Zip Code: 02451
UI: 20143610
Project Status: Completed
Related Records: The Multiple Sclerosis Patient-Powered Research Network (MS-PPRN), iConquerMS(TM): phase II