PI CONNECT is a tool designed to directly connect patients to research being conducted in the field of primary immunodeficiency (PI) diseases.
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The IDF ePHR is the electronic personal health record designed for the primary immunodeficiency (PI) community. Featuring innovative technology, IDF ePHR uses an advanced online system to transform how patients with PI manage their health!
Learn how to sync your IDF ePHR with Microsoft HealthVault
Learn how to use the IDF ePHR Health Calendar.
Joe Selby, MD, MPH, Executive Director of the Patient-Centered Outcomes Research Institute (PCORI), explains how patient involvement is the future of research and how the Immune Deficiency Foundation's PI CONNECT enables patients to take part in it.
Immune Deficiency Foundation hosted a PI CONNECT Research Forum Webinar on Common Variable Immune Deficiency (CVID).
Topics and presenters included:
- "Why the Immune System Makes Mistakes: Mechanisms of Autoimmunity and Allergy in CVID" by Kathleen Sullivan, MD, PhD, Children’s Hospital of Philadelphia;
- "Latest Findings in CVID" by Charlotte Cunningham-Rundles, MD, PhD, Mount Sinai School of Medicine
- "Allergies in CVID" by Kenneth Paris, MD, MPH, Louisiana State University Health Sciences Center and Children’s Hospital
The top four discussions in the PI CONNECT Research Forum (www.idfpiconnect.org) were discussed real-time between patients and researchers at the PI CONNECT Live! session at the IDF 2015 National Conference in New Orleans.
Immune Deficiency Foundation hosted a PI CONNECT Research Forum Webinar on Body Temperature and Fever Response.
Learn more at www.idfpiconnect.org
Track Your Health & Help Advance Research with IDF ePHR and IDF PI CONNECT. Learn more about the Immune Deficiency Foundation's electronic personal health record, and patient-powered research network for individuals with primary immunodeficiencies at www.idfephr.org
Kathy, a mother of a patient with primary immunodeficiency, explains how she uses the IDF ePHR to track her son's illness, and how her participation in IDF PI CONNECT is helping to advance research.