Patient-Powered Research Network

MS Patient-Powered Research Network

MS Patient-Powered Research Network

ACP and our partners are excited to offer people with MS a ground-breaking new way to help drive MS research and accelerate efforts toward improving treatments and finding a cure for MS.

We recently received funding to create the MS Patient-Powered Research Network (MS-PPRN), which will feature an online portal that can be accessed anywhere, anytime. Through this new iConquerMS™ portal, people with MS will be able to participate in and help drive MS research by:

  • Sharing and tracking personal health and medical information in a secure and de-identified way
  • Helping to set the research agenda for studies performed using network data
  • Contributing biological samples through home-based collection or local laboratories
  • Reviewing educational content about the nature of MS research and the studies supported by the MS-PPRN
  • Connecting and sharing experiences with other people in the MS community

Our hope is that people with MS will be eager to join this cutting-edge network because it is only through more involvement of the entire MS community that we can better accelerate efforts toward improving treatments and finding a cure.

Please sign up for our iConquerMS™ Newsletter to receive notification of the portal’s status and launch and to learn more about other ways you can get involved.

More about this initiative

Funding was awarded by the Patient-Centered Outcomes Research Institute (PCORI)

The funding for the patient-powered research network is provided by the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. For more information about PCORI funding, visit http://pcori.org/funding-opportunities.

MS-PPRN is part of the National Patient-Centered Clinical Research Network to improve health research efficiency

The MS-PPRN is one of 29 health data networks that will form PCORnet: the National Patient-Centered Clinical Research Network, a new national resource that aims to boost the efficiency of health research. PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research (CER).

By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. It will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them.

Multiple stakeholders were involved in the selection of the MS-PPRN as a national awardee

The MS-PPRN was selected for PCORnet through a competitive review process in which patients, caregivers, and other stakeholders joined scientists to evaluate the proposals. Applications were assessed for the capacity of their network to collect complete, comprehensive clinical data, how well they will engage patients and other stakeholders, and their ability to maintain data security and patient privacy among other criteria.

Our goal is to have 20,000 iConquerMS™ participants by mid-2015

By the end of our 18-month award, we expect the iConquerMS™ portal will be actively used by more than 20,000 people with MS, or 5% of the estimated MS population in the United States. To achieve this goal, we will:

  • Work closely with MS advocacy organizations, such as the MS Coalition, who have agreed to invite their members
  • Engage our existing ACP Repository network of more than 3,200 participants
  • Drawn upon our relationships with 60 research teams and MS specialty clinics nationwide
  • Work with other MS clinics and community neurologists interested in forwarding our cause

We are collaborating with other leading organizations to create the MS-PPRN and the iConquerMS™ portal.

To build the MS-PPRN, ACP is collaborating with the following organizations:

  • Complex Adaptive Systems Initiative at Arizona State University
    Complex Adaptive Systems Initiative (CASI) is a program within Arizona State University that leverages trans-disciplinary relationships to address complex global challenges in health, sustainability, security, and education by creating entirely new technologies and novel solutions. This requires integration of diverse research disciplines across the University and building an extended network of global collaborations.
  • Feinstein Kean Healthcare
    Feinstein Kean Healthcare (FKH) is a leading strategy and communications partner for emerging and established organizations whose innovations are helping to transform life sciences and healthcare. The firm works with clients at the intersection where disruptive technologies and ideas influence medicine, clinical research and practice, business models, public policy, and public opinion and behaviors.