PCORnet will focus on questions and outcomes that matters most to patients and their caregivers to help shape the future of hereditary cancer research
Tampa, FL – A team led by the University of South Florida (USF Health) Morsani College of Medicine and the leading national hereditary breast and ovarian cancer advocacy organization, FORCE (Facing Our Risk of Cancer Empowered) received a $1.45-million funding award for a three-year project from the Patient-Centered Outcomes Research Institute (PCORI) to continue to advance and expand the ABOUT Network as part of the second phase of PCORnet: the National Patient-Centered Clinical Research Network.
The ABOUT Network (American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network) focuses on hereditary cancer and is one of 34 health data networks recently approved for a total of $142.5 million from PCORI to support PCORnet. PCORnet is a large, collaborative research initiative designed to link researchers, patient communities, clinicians, and health systems in productive research partnerships to 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.
The team is led by co-principal investigators Rebecca Sutphen, MD, professor of genetics at the USF Health Morsani College of Medicine, and Dr. Sue Friedman, founder and executive director of FORCE. The Michigan Department of Health and Human Services Genomics and Genetic Disorders Section and advocacy organizations Black Women's Health Imperative, Ovarian Cancer National Alliance, Sharsheret and Young Survival Coalition are also partners in the next phase of the network.
Rebecca Sutphen, MD
Dr. Sue Friedman
"Our USF and FORCE teams bring highly complementary expertise in research and advocacy to this effort, and we anticipate that together we will play an important role in shaping the future of hereditary cancer research to improve health for the high-risk community," said USF's Dr. Sutphen. "We were honored to be selected as an inaugural member in Phase I of the PCORnet National Clinical Research Network and are excited to continue this important work in Phase II."
"FORCE's continued involvement in this collaboration will further advance our mission to improve the lives of people and families affected by hereditary breast and ovarian cancer," said FORCE's Dr. Friedman. "Our participation in PCORnet will provide members of our community with an unprecedented opportunity to establish goals, identify unmet needs, and shape the priorities for comparative effective research."
"We're pleased that the ABOUT Network 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."
The funding award to the ABOUT Network 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 health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.
About USF Health
USF Health's mission is to envision and implement the future of health. It is the partnership of the USF Health Morsani College of Medicine, the College of Nursing, the College of Public Health, the College of Pharmacy, the School of Biomedical Sciences and the School of Physical Therapy and Rehabilitation Sciences; and the USF Physician's Group. The University of South Florida is a Top 50 research university in total research expenditures among both public and private institutions nationwide, according to the National Science Foundation. For more information, visit www.health.usf.edu.
No one should have to face hereditary breast and ovarian cancer alone. For more than 15 years, FORCE has been the voice of the hereditary breast and ovarian cancer community. FORCE provides support, education and programs to help those facing hereditary breast and ovarian cancer know their healthcare options and make informed decisions. The organization is the de facto leader in guiding critical research and policy issues that impact the hereditary breast cancer and ovarian cancer community. For more information about FORCE and hereditary breast and ovarian cancer, please visit www.facingourrisk.org.
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 health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available www.pcori.org.