The Primary Immune Deficiency (PID) Treatment Consortium (PIDTC) consists of 47 centers in North America whose shared goal is to improve the outcome of patients with rare, life threatening, inherited disorders of the immune system. Basic scientists, immunologists, and transplant physicians from the participating centers have contributed much of the current knowledge of the cause and treatments of PID. The immediate focus of the consortium is to concentrate on four severe immune disorders which can be cured by hematopoietic stem cell transplantation, enzyme replacement, and/or or gene therapy by bringing together physician/scientists who evaluate and care for the majority of children with PID in North America.
The PIDTC Can Help You:
- Learn more about inherited disorders of the immune system including newborn screening
- Quickly connect with experts in a PIDTC center in your area who diagnose and treat inherited immune disorders
- Learn about treatment options and new research studies for patients with these diseases
- Answer questions your physician may have about immune disorders
- Connect with patient advocacy (support) groups
The PIDTC has developed a centralized computerized registry with the eventual aim of including all patients diagnosed with inherited immune diseases in North America. As many hospitals in North America see only 1-2 patients/yr with these disorders, a centralized registry will allow physicians to learn more about the frequency of these diseases, how they present, and the best treatment outcomes.
The first two protocols developed by the PIDTC will study children with severe combined immune deficiency disease (SCID), a disorder of the lymphoid cells which results in the complete inability of infants to fight viruses, fungi, parasites, and certain bacteria. One study will focus on children who have already undergone transplantation to identify patient and donor characteristics which affect transplant outcome; the other will follow children who undergo transplant starting in August 2010. It is hoped these two studies will help identify factors which will result in the safest and best treatment options for infants with SCID.