Towson, MD, December 19, 2013 – A team led by the Immune Deficiency Foundation (IDF) has been approved for a funding award by the Patient-Centered Outcomes Research Institute (PCORI) to develop and expand a health data network that will be part of PCORnet: the National Patient-Centered National Clinical Research Network. The Immune Deficiency Foundation PI CONNECT data network is one of 29 that were approved for a total of $93.5 million from PCORI on December 17 to form this 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.
Moreover, PCORnet will join together networks operated by both patient communities and health systems and will require patients’ and other stakeholders’ involvement in all aspects of the collection and use of the data. By enabling researchers and patients, clinicians, and other end-users of study results to interact directly and jointly determine research priorities, such as the selection specific studies to support, PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies.
During the next 18 months, the IDF-led team will use the PCORI funds to expand and improve its systems, work to standardize its data, and be part of the process to develop policies governing data sharing and security and protection of patient privacy. It also will refine its network’s capacity to engage and recruit patients and other stakeholders interested in participating in research.
The team is led by principal investigator Kathleen Sullivan, MD, PhD of Children’s Hospital of Philadelphia. The team includes several team members from the Immune Deficiency Foundation.
“Currently, two unique data sets for primary immunodeficiency diseases (PI) exist: the IDF eHealthRecord, an electronic personal health record for patients with PI, and the United States Immunodeficiency Network patient-consented registry, a data-validated registry of clinical information,” explained Dr. Sullivan, “For those patients who choose to participate, PI CONNECT will provide the opportunity to meld these two data sets to maximize the breadth of data on PI and accelerate understanding and treatment of these rare diseases.”
“We are pleased that PI CONNECT will be part of this exciting initiative to build the data structures needed to significantly enhance the speed and efficiency of patient-centered comparative effectiveness research,” said PCORI Executive Director Joe Selby. “The process to select the awardees was very competitive and PI CONNECT demonstrated it has the expertise, resources, and commitment to engaging patients and other stakeholders to be an excellent fit in PCORnet.”
PI CONNECT was selected through a 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.
“The Immune Deficiency Foundation recognizes the magnitude of this award from PCORI. It will build upon our existing, robust programs supported by a motivated patient community who want results,” said IDF President & Founder Marcia Boyle, “We look forward to implementing PI CONNECT, ultimately helping to improve the lives of those living with primary immunodeficiency.”
All awards are approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.
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.
About The Immune Deficiency Foundation
The Immune Deficiency Foundation (IDF), founded in 1980, is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. To learn more about IDF programs, services and educational materials, visit our website at www.primaryimmune.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 at www.pcori.org.