IDF PI CONNECT Approved for Second Phase of Development of PCORnet, a New National Clinical Research Network

Jul 22, 2015, 09:42 ET from Immune Deficiency Foundation

TOWSON, Md., July 22, 2015 /PRNewswire-USNewswire/ -- PI CONNECT, a program of the Immune Deficiency Foundation (IDF), has been approved for a three-year funding award by the Patient-Centered Outcomes Research Institute (PCORI) as part of the second phase of the development of PCORnet, the National Patient-Centered Clinical Research Network.

This funding award continues PCORI's support for PI CONNECT's participation in PCORnet, 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.

As one of 34 health data networks that together make up this national clinical research resource in Phase II, PI CONNECT is contributing expertise and resources focused on people living with primary immunodeficiency diseases, and led by Principal Investigator, Kathleen Sullivan, PhD, MD.

"I am thrilled that PI CONNECT has been approved for a Phase II funding award," said Marcia Boyle, IDF President & Founder. "At IDF, we truly believe in the power patients have to impact research and ultimately create better outcomes and treatments for all people living with PI, and this funding award will help us continue our efforts."

The new funding award will support PI CONNECT's continuing efforts to give researchers valuable insight into the patient experience by joining the information patients enter into their IDF ePHR, the online personal health record for patients with primary immunodeficiency (PI), with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand patients with PI.

"We're pleased that PI CONNECT 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 PI CONNECT 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. More information is available at

About Immune Deficiency Foundation
The Immune Deficiency Foundation (IDF), founded in 1980, is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with PI through advocacy, education and research. There are approximately 250,000 people who are diagnosed with PI in the U.S., and thousands more go undetected. More information is available at


SOURCE Immune Deficiency Foundation