BOSTON, Dec. 19, 2013 /PRNewswire/ -- A team led by the Accelerated Cure Project for Multiple Sclerosis (ACP) has been approved for a funding award by the Patient-Centered Outcomes Research Institute (PCORI) to create the Multiple Sclerosis Patient-Powered Research Network (MS-PPRN). The MS-PPRN is one of 29 health data networks that were approved for a total of $93.5 million from PCORI to form the PCORnet: the National Patient-Centered Clinical Research Network, a new national resource that aims to boost the efficiency of health research.
ACP will build on its existing network of more than 3,200 participants, 60 research teams, and MS specialty clinics around the country to create a national patient-powered research network for MS in partnership with the Complex Adaptive Systems Initiative at Arizona State University and Feinstein Kean Healthcare. The MS-PPRN will feature 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.
"The MS Patient-Powered Research Network is a ground-breaking initiative that will help to drive research to end MS forever," said Timothy Coetzee, Ph.D., Chief Advocacy, Services, and Research Officer for the National Multiple Sclerosis Society.
"We are extremely pleased that PCORI is funding the Accelerated Cure Project's program to create the MS Patient-Powered Research Network," said Edward Abrahams, Ph.D., President of the Personalized Medicine Coalition. "We believe such programs comprise a major cornerstone for a new era in which broad-based patient engagement that recognizes individual variation and productive usage of data will lead to faster discoveries and improved care for patients."
The iConquerMS™ 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. The MS-PPRN will be fully integrated with the Clinical Data Research Networks and the Coordinating Center of PCORnet.
Patients will also have the option of contributing biological samples through home-based collection or local laboratories to support biomarker research in MS. Additionally, 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 via the portal will provide more knowledge about MS research and allow patients to contribute their own ideas.
ACP's 18-month goal for enrollment in the MS-PPRN is 20,000 people with MS (5% of the estimated MS population in the United States), starting with the 3,200 participants in the current 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, highly cooperative MS advocacy organizations who have agreed to invite their members, and social media and other communications channels.
"We congratulate ACP and the MS-PPRN team on receiving this award and look forward to working with them on this effort to help improve the quality of life for those affected by MS," said Doug Franklin, President & CEO of the Multiple Sclerosis Association of America and President of the MS Coalition, a collaborative network of independent MS organizations.
"The response to developing the MS Patient-Powered Research Network has been amazing," said Robert McBurney, President and CEO of the Accelerated Cure Project for MS. "It is a huge honor for ACP to receive this award and to participate in this innovative national approach to transforming healthcare. Our partners across the MS community are committed to working with us to empower and engage patients in improving treatments and in finding a cure for this devastating disorder."
The MS-PPRN was selected 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.
All awards are approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.
About Accelerated Cure Project for MS
Accelerated Cure Project for MS (ACP) is a nonprofit organization whose mission is to accelerate research efforts to improve diagnosis, to optimize treatment and to cure MS. ACP believes that research is the only way to greatly improve the outlook for people with MS. The organization promotes scientific collaboration and accelerates research by rapidly and cost-effectively providing researchers with data and biospecimens they need to explore novel research ideas that can lead to better diagnoses, to new treatments and to cures for people with MS. Its resources have supported 77 research studies worldwide that have generated more than 270 million returned data points for collaborative data mining and disease modeling. To learn more about the focus, activities, and impact of ACP, please visit http://www.acceleratedcure.org.
About 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. For 25 years, FKH has been a trusted partner to leading pharmaceutical, healthcare, technology, biotechnology, informatics, and patient advocacy organizations. Hundreds of clients have turned to FKH to develop and execute programs that drive product commercialization; forge partnerships; transform markets; build constituencies; and help to shape policies. FKH established the first personalized medicine practice in the nation in 2004, and has worked with commercial, academic, and government innovators to advance adoption of personalized medicine approaches ever since. Learn more at http://fkhealth.com/.
About Complex Adaptive Systems Initiative
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. Please visit http://casi.asu.edu/home for more information.
About PCORI
The Patient-Centered Outcomes Research Institute (PCORI) is 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. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. PCORI has awarded a total of $464.4 million since it began funding CER in 2012. For more information about PCORI funding, visit http://pcori.org/funding-opportunities. More information is available at www.pcori.org.
About PCORnet
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.
Publication Date:
Thursday, December 19, 2013