PI Patient Research Connection: PI CONNECT

Details and Information

PI CONNECT combines patient data from several sources.  Visit these web pages to learn more and find out how to join the network.

Areas of Focus: Primary Immunodeficiency Diseases

Population Characteristics: All

Organization: Immune Deficiency Foundation

Contact: [email protected] 

Principal Investigator: Kathleen Sullivan, MD, PhD

Co-Principal Investigators: Christopher Scalchunes, MPA

About PI Connect

The PI CONNECT Patient Powered Research Network (PPRN) was created to join patient reported data and outcomes through the 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. Bringing together this information through PI CONNECT gives researchers valuable insights and a depth of information that together will help advance research and improve treatments for PI.

As part of PCORnet, PI CONNECT brings our patient community to the research table along with other PPRNs and Clinical Data Research Networks (CDRNs). Combined, we learn from each other, sharing our ideas and expertise. The result is improved research that matters to patients. PCORnet is making clinical research faster and more efficient. PI CONNECT is proud to be a part of this transformation.

Follow PI CONNECT on Facebook and Twitter.

Last updated on August 30, 2016