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The Multiple Sclerosis Patient-Powered Research Network (MS-PPRN), iConquerMS(TM): phase II
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: 2015
Final Year: 2018
Record Source/Award ID: PCORI/PPRN-1306-04704 Phase II
Funding: Total Award Amount: $1,332,212
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: The Multiple Sclerosis Patient-Powered Research Network (MS-PPRN) iConquerMS(TM) has been developed to advance and accelerate patient-centered research in multiple sclerosis (MS). From its inception, the network has harnessed the power and voice of the community of people living with MS. Its governing board and membership, communications, and research committees are populated by a majority of people with MS, committed to participating in and shaping MS research. The iConquerMS(TM) network is continually being enhanced through collaborative ties with diverse stakeholders, including leading MS advocacy organizations, clinicians, MS researchers, and other member networks of PCORnet. People with MS and other stakeholders are enrolling in the network via its portal, iConquerMS.org, rich with features designed to engage, retain, and communicate with network participants. The network aims to create an active community of 20,000 participants. Registered participants can securely and privately submit their health data using validated surveys and via their electronic health records. With oversight of the research committee and collaborative relationships with researchers, the network is well-positioned to conduct patient-powered research. The MS-PPRN's technical infrastructure provides strong privacy and data security protections, and will evolve to integrate other data sources, to ensure the availability of high-quality, analysis-ready, standardized data for research studies on a wide range of topics that matter to people with MS. Future network activities will be designed to ensure active participation of a highly engaged and diverse set of stakeholders in the network's membership, governance, research, and sustainability endeavors. Through continued and enhanced communications with MS patients, researchers, clinicians, health systems, health care companies, and PCORnet partners, the broad iConquerMS(TM) community will continue to expand in size, representativeness, and diversity--becoming highly engaged in proposing and participating in research studies. In the next phase of the project, a top priority will be to maximize the value of the iConquerMS(TM) network and PCORnet to carry out research studies of importance to people with MS and the US health care system. All network activities will continue to be patient-centered and governed with oversight, policies, and processes reflecting the interests of people with MS, and enhancing their understanding of and trust in research. iConquerMS(TM) is fulfilling the vision of creating an ideal network in which people with MS play an active role in patient-centered comparative effectiveness research. We look forward to continuing to fulfill this vision in ways that significantly transform MS research.
MeSH Terms:
  • Biomedical Research /*methods
  • Comparative Effectiveness Research
  • Data Collection
  • Electronic Health Records
  • Humans
  • Multiple Sclerosis /*therapy
  • * Patient Participation
  • Patient-Centered Care
  • Professional-Patient Relations
  • Program Development
  • Surveys and Questionnaires
  • United States
Country: United States
State: Massachusetts
Zip Code: 02451
UI: 20162219
Project Status: Completed
Related Records: A Multiple Sclerosis Patient-Powered Research Network