Celiac Disease Foundation is pleased to announce that the Community Engaged Network for All (CENA), a Patient-Powered Research Network of PCORnet, was approved for Phase 2 funding. CDF was selected as a CENA participant to develop the health-related celiac disease and gluten sensitivity survey questions for patients and their caregivers that will allow for optimal data collection to facilitate research. CDF is working with the research and medical communities in the survey design prior to launch to the patient community.
WASHINGTON, DC (July 21, 2015) – The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved nearly $142.5 million to support the ongoing development and expansion of an ambitious new resource for health research known as PCORnet, the National Patient-Centered Clinical Research Network.
The funds include support to add seven health data networks to this large, collaborative initiative, which is 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.
PCORI is developing PCORnet to enhance the nation’s capacity to conduct patient-centered health outcomes research more quickly, less expensively, and with greater potential impact than is now possible. Through the active participation of patients and other healthcare stakeholders, PCORnet will ensure that research focuses on the questions and outcomes that matter most to patients and those who care for them.
The funding awards approved today will support a three-year second phase of development during which several research studies will begin. Specifically, the funding will support 34 individual health data networks that together make up PCORnet, including continued support for 27 networks selected to participate in PCORnet’s first phase of development, which began in April 2014. These will be joined by seven new networks that will expand PCORnet’s capacity to conduct studies on a wide range of health topics and questions affecting multiple patient populations.
The new partner networks bring additional expertise, resources, and patient participation focused on Alzheimer’s disease and dementia, autism spectrum disorders, heart disease, obesity, Parkinson’s disease, behavioral health disparities among low-income populations, and health disparities among sexual and gender minorities, among other areas.
Together, the 34 PCORnet partner networks cover more than 150 conditions and a wide variety of population groups. Many of the networks involve multiple organizations, giving PCORnet sites in every state nationwide. A list of all partner networks can be found at pcori.org/pcornet.
“Having key stakeholders — researchers, patients, clinicians, and health systems — working together to co-create PCORnet has been a tremendous step forward in how we approach health research,” said PCORI Executive Director Joe Selby, MD, MPH. “We’re proud of the achievements of the participating individuals and organizations that have worked so diligently to prepare PCORnet to begin conducting robust and efficient patient-centered research.”
“Our main goal for the next three years is to sharply ramp up PCORnet’s capacity to serve as the platform for rapidly and efficiently conducting high-quality, patient-centered studies,” said Rachael Fleurence, PhD, Director of PCORI’s Comparative Effectiveness Research Methods and Infrastructure Program. “We’ll continue to facilitate a national conversation about what it means to share health data and the roles we all have in addressing the health questions and outcomes that matter most to patients.”
PCORnet integrates health data for studies and catalyzes research partnerships among two types of networks: Clinical Data Research Networks (CDRNs), which are based in healthcare systems such as hospitals and health centers, and Patient-Powered Research Networks (PPRNs), which are run by groups of patients and their partners who are focused on one or more specific conditions or populations and are interested in sharing health information and participating in research. With the addition of the new networks, PCORnet’s collaborative “network of networks” now consists of 13 CDRNs and 21 PPRNs.
During the next three years, the participating networks are expected to demonstrate their capacity to support large multi-network studies, both randomized and observational, as well as rapid-cycle studies and other types of research using standardized data sets with strong patient privacy and security protections. In addition, the partner networks are expected to significantly increase their collaborations and to develop plans for sustaining their operations beyond the end of this phase.
The funding awards to the 34 partner networks have been approved by PCORI’s Board pending completion of a business and programmatic review by PCORI staff and negotiation of a formal award contract. With these awards, PCORI has now approved or awarded over $250 million for PCORnet to support the partner networks and their coordination as well as the first of several demonstration research studies.
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.
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 clinical effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research that directly involves patients in the development and execution of the research. More information is available at www.pcornet.org.