Accelerated Cure Project for Multiple Sclerosis Approved for Second Phase of Development of PCORnet, a New National Clinical Research Network
Funding supports iConquerMSTM, the only multiple sclerosis research initiative in PCORnet
WALTHAM, MA, July 28, 2015 – The Accelerated Cure Project for Multiple Sclerosis has been approved for a three-year $1.3 million funding award by the Patient-Centered Outcomes Research Initiative (PCORI) for ongoing development of iConquerMSTM. iConquerMSTM is a nationwide initiative by and for individuals living with multiple sclerosis who recognize the power of their health data and insights, and want to harness that power to fuel research; and is part of PCORnet, the National Patient- Centered Clinical Research Network.
This funding award will allow iConquerMSTM, one of the 34 health data networks that together make up PCORnet, to continue building a unique research resource that encompasses a longitudinal description of the MS population’s experience, and to assess the impact of MS on those who live with the disease. Patient data collected through iConquerMSTM is expected to fuel research that will yield insights on a wide variety of topics, such as symptoms, treatments, and quality of life, leading to improved diagnoses, better treatment outcomes, and, ultimately, cures for MS.
iConquerMSTM launched nationwide in February 2015 and, with more than 2,000 patients registered as research participants, constitutes a large and growing cohort for data-driven research into topics of interest for people living with MS. iConquerMSTM is already advancing several research concepts, and is open to research collaborations with academic, government and industry organizations in the U.S. and internationally.
“On behalf of the entire iConquerMSTM team, including patients, researchers, and our advocacy supporters, we are delighted to receive additional funding from PCORI; their support and commitment to our ambitious agenda speaks to the true value of this new model for research in multiple sclerosis,” said Robert McBurney, Ph.D., President and CEO of the Accelerated Cure Project for MS and the Principal Investigator for iConquerMSTM. “Patients are truly leading this effort through our governance process, as well as guiding its aims and strategies by contributing ideas for research.”
“We're pleased that iConquerMSTM has been approved for this funding support to continue our productive mutual efforts to build what we intend to be a premier national resource for conducting high- quality, patient-centered clinical research," said PCORI Executive Director Joe Selby, MD, MPH. “I greatly appreciate the contributions of all the PCORnet partners during Phase I, which readied PCORnet for a robust start on an exciting second phase of expansion and the launch of several research studies.
" “Those of us living with multiple sclerosis welcome the opportunity to share in iConquerMSTM because we understand the need for patient-centered research that is inclusive, and asks us what is meaningful to our lives for further study. We’re seeking answers to questions that have been prioritized by people living with MS, and this continued funding from PCORI allows us to expand the community to involve even more people, and build on the work begun in Phase I,” said Laura Kolaczkowski, Lead Patient Representative for iConquerMSTM and Co-Principal Investigator for Phase II. “The collaborative nature of iConquerMSTM brings the various stakeholders together to work on research that is insightful and impactful, and I am grateful for the opportunity to continue on in this next phase, working in an environment that values the patient voice and experiences.”
The funding award for iConquerMSTM has been approved by PCORI’s Board pending completion of a business and programmatic review by PCORI staff and negotiation of a formal award contract. PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information they need to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. The initial funding for iConquerMSTM was provided to Accelerated Cure Project for MS, who partnered with Arizona State University and Feinstein Kean Healthcare to develop and launch iConquerMSTM.
PCORnet is a large, collaborative research initiative designed to link researchers, patient communities, clinicians, and health systems in productive research partnerships that leverage the power of large volumes of health data maintained by the partner networks. PCORnet will enable the nation to conduct clinical research more quickly and less expensively than is now possible and will ensure that research focuses on the questions and outcomes that matter most to patients and those who care for them.
iConquerMSTM is an initiative by and for individuals living with MS who understand the need to contribute their ideas and their health data to fuel research. iConquerMSTM was established in 2014 as a partnership between the Accelerated Cure Project for MS, a non-profit organization with proven experience sharing resources with MS researchers worldwide; Feinstein Kean Healthcare; and Arizona State University. Funding for the first component of iConquerMSTM, called the MS Patient-Powered Research Network (MS-PPRN), was provided by the Patient-Centered Outcomes Research Institute (PCORI). iConquerMSTM is part of PCORI’s national clinical research network, PCORnet.
ACP is a patient-founded non-profit organization dedicated to accelerating research efforts to improve diagnoses, optimize treatment outcomes, and develop cures for MS. The ACP team has proven experience in developing and sharing resources with MS researchers. The organization promotes scientific collaboration and accelerates research by rapidly and cost-effectively providing researchers with the resources they need to explore novel research ideas that can lead to better care for people living with MS. ACP leads the iConquerMSTM initiative, overseeing the Governing Board and committees, as well as PCORI-related activities. Its deep MS knowledge and community relationships have driven efforts to build and grow iConquerMSTM.
Feinstein Kean Healthcare (FKH) provides strategic communications services to life sciences and healthcare innovators. The firm serves the entire biomedical spectrum, including large pharmaceutical, emerging biopharmaceutical, medical device, diagnostics and health IT companies; academic centers; policy organizations; patient advocacy organizations; government agencies; and healthcare providers. FKH is deeply engaged in the technical and cultural challenges of collection, integration, analysis, and dissemination of health data, and has initiated and led multiple national initiatives to address these barriers. FKH is a partner in the iConquerMSTM initiative and the member of the Project Team responsible for the development of all iConquerMSTM outreach and visibility.
CAS @ ASU addresses complex global challenges by combining insights from different fields across the University. It develops and applies information technology to better collect, connect, and enhance this transdisciplinary knowledge, resulting in entirely new technologies and solutions. CAS @ ASU has partnered with Life Data Systems Inc., and together serve as members of the iConquerMSTM Project Team to provide the IT components underpinning iConquerMSTM. These components allow people living with MS to easily and securely contribute data and electronic health records. The components ensure the iConquerMSTM data connects seamlessly with PCORI’s national research network.
About the Patient-Centered Outcomes Research Institute (PCORI)
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit 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. For more information about PCORI, please visit www.pcori.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct comparative effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research.
Accelerated Cure Project for MS 781-487-0032