An added benefit for users of IDF ePHR is the opportunity to be a part of research by consenting into PI CONNECT, the new IDF Patient-Powered Research Network.
PI CONNECT joins the information you enter in your 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 insight into the patient experience. Rest assured, your information is safe, secure and de-identified.
IDF was approved for a funding award for PI CONNECT from the Patient-Centered Outcomes Research Institute (PCORI). PI CONNECT is a part of PCORnet: the National Patient-Centered National Clinical Research Network. PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies, giving patients “a seat at the research table.”
PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research.
PI CONNECT along with all networks in PCORnet will form a new national resource with the goal to boost the efficiency of health research.