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PIDTC

Participation Needed: Survey on Transplant for Treatment of Chronic Granulomatous Disease

Did you or a child have a transplant for CGD? Help the Chronic Granulomatous Disease Association of America (CGDAA) and Primary Immune Deficiency Treatment Consortium (PIDTC) learn more about post-transplant health. The survey is expected to take 10-15 minutes to complete and will help us learn how to manage post-transplant conditions and advocate for standardized medical care. Survey is open until February 14, 2024. 

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Issue 16 | Summer

Read greetings from the PIs, a spotlight on a CGD Family, PAG updates, discover Neurodevelopmental Outcomes in SCID Study, meet the PMWC Awardee, learn about ASTCT/CIBMTR Tandem Meeting presentations, protocol updates, and more.

Issue 14 | Winter/Spring

The PIDTC begins the year with restarting the 6907 (SCID) protocol activation at all 47 PIDTC sties and with obtaining NIAID approval for our 6908 (CGD) and 6906 (PIRD) in the near future. We are very excited for these protocols to launch consortium wide and for everyone to see the efforts of our protocol teams come to fruition.

Issue 10 | Fall

Five more years, three new protocols, two Co-PIs and one amazing consortium with the shared goal of improving the lives of people living with primary immunodeficiencies. This grant cycle, we introduce Primary Immune Regulatory Disorders (PIRD) to our list of diseases studied and look forward to collaborating with our partners at the newly funded Cincinnati DMCC.

Issue 05 | Spring

Updates from Patient Advocacy Groups, IDF Educational Packets & Conference, current enrollments and goals, 6901 Prospective SCID update, PIDTC patient highlight, meet UCSF’s Ja’ Ceon, RDCRN DMCC Update, and more.
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