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Primary Immune Deficiency Treatment Consortium (PIDTC) update
Linda M Griffith1, Morton J Cowan2, Luigi D Notarangelo3
1Division of Allergy, Immunology and Transplantation, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Md.
The Primary Immune Deficiency Treatment Consortium (PIDTC) advances rare primary immune deficiency (PID) research through multicenter studies. Their work includes analyzing hematopoietic cell transplantation outcomes for severe combined immune deficiency (SCID) and developing newborn screening protocols.
Area of Science:
- Immunology
- Genetics
- Pediatrics
Background:
- Rare primary immune deficiency diseases (PIDs) require specialized research and treatment strategies.
- The Primary Immune Deficiency Treatment Consortium (PIDTC) unites North American and European centers to study PIDs.
- Key PIDs studied include severe combined immune deficiency (SCID), Wiskott-Aldrich syndrome (WAS), and chronic granulomatous disease (CGD).
Purpose of the Study:
- To review the accomplishments, ongoing projects, and future challenges of the PIDTC.
- To highlight the consortium's contributions to understanding and treating rare PIDs.
- To showcase the collaborative efforts in advancing PID research and patient care.
Main Methods:
- Multicenter longitudinal studies (retrospective, prospective, cross-sectional) analyzing treatment outcomes.
- Enrollment of over 800 subjects in SCID protocols since 2009, with ongoing enrollment for WAS and CGD.
- Funding of pilot projects and fellowship awards for junior investigators.
Main Results:
- Key publications detail hematopoietic cell transplantation outcomes for SCID (2000-2009), diagnostic criteria for SCID, and SCID newborn screening pilot results.
- Successful enrollment of subjects in SCID, WAS, and CGD studies.
- Establishment of collaborative networks through annual scientific workshops.
Conclusions:
- The PIDTC has made significant contributions to the understanding and treatment of rare PIDs.
- Ongoing research and collaboration are crucial for advancing the field.
- The consortium's renewal ensures continued progress in PID research and patient care.
