TOWSON, Md., May 4, 2015 /PRNewswire/ -- The Immune Deficiency Foundation (IDF) welcomes six new patients and caregivers to the PI CONNECT Governance Committee, a group that advises appropriate and sensitive policies, as well as guides patient engagement for PI CONNECT, the IDF Patient-Powered Research Network. The committee consists of clinicians, members of the IDF Board of Trustees and the IDF Medical Advisory Committee, patients and caregivers from the primary immunodeficiency (PI) community, and representatives of IDF and the United States Immunodeficiency Network (USIDNET).
PI CONNECT merges the information entered by patients into IDF ePHR, the electronic personal health record for patients with PI, with the 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.
"Being a patient member of this committee, I feel honored to represent the PI community. With our new members, I believe we are a stronger force to transform research," said Brian Rath, patient and Co-Chair of the committee, "Collectively, we are dedicated to helping advance PI research and engaging others to take part also, all the while protecting patient data."
This PI CONNECT Governance Committee will be responsible for making policy decisions, responding to requests for data, ensuring alignment with regulatory guidelines, directing research strategies and driving patient engagement throughout the research process. This committee has a Patient Co-Chair, as well as a patient/caregiver on all subcommittees: Patient Engagement, Research, Communications/Information Dissemination, Human Subjects Protection and Data Security.
"As a patient organization, the Immune Deficiency Foundation focuses on improving the lives of those with primary immunodeficiencies," explains Marcia Boyle, IDF President & Founder, "Expanding this committee helps IDF further realize its commitment to patients, especially by including representatives from smaller, specific disease communities, such as Chronic Granulomatous Disease, Severe Combined Immune Deficiency and Wiskott-Aldrich Syndrome."
PI CONNECT Governance Committee members include: Barb Ballard; Francisco Bonilla, MD, PhD; John M. Boyle, PhD; Colleen Brock; Charlotte Cunningham-Rundles, MD, PhD; Terry Halper, MPH; Sumathi Iyengar, MD; Judy Kozulak; Richard Low; Felicia Morton; Brian Rath; John Seymour, PhD, LMFT; James Severin; Heather Smith; and Kathleen Sullivan, MD, PhD. IDF staff committee members include Marcia Boyle as well as John G. Boyle; Tara Caulder; Erica Hebrank; Erin Poff; and Christopher Scalchunes.
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. For more information, visit www.primaryimmune.org, or call 800-296-4433.
PI CONNECT is funded by the Patient Centered Outcomes Research Institute (PCORI) and a part of the National Patient Centered Clinical Research Network (PCORnet).
USIDNET is a program of IDF and funded in part by the National Institute of Allergy and Infectious Diseases (NIAID) and the National Institutes of Health (NIH).
SOURCE Immune Deficiency Foundation