The mission of the Consortium is to maintain a clinical research network to study rare suppurative diseases of the airways, focusing on primary ciliary dyskinesia (PCD) and primary immunodeficiencies (PID).
The consortium consists of eight primary sites across North America:
- University of North Carolina at Chapel Hill (Chapel Hill, North Carolina)
- Washington University in St. Louis (St. Louis, Missouri)
- University of Washington (Seattle, Washington)
- University of Colorado (Denver, Colorado)
- Stanford University (Palo Alto, California)
- National Heart, Lung and Blood Institute (Bethesda, Maryland)
- The Hospital for Sick Children (Toronto, Ontario, Canada)
- McGill University (Montreal, Quebec)
The GDMCC works closely with several Patient Advocacy Groups, the larger Rare Diseases Clinical Research Consortium, and investigators/trainees at other clinical and academic centers. A major focus of our mission is to raise awareness of these disorders in the general public and educate policy makers, improve recognition of these disorders by physicians, and to train future generations of physicians and scientists who will lead the continuing advance in rare disease research.
All Consortium sites have expertise in studying the genetics and pathogenesis of airway diseases, clinical trial design, and development of novel therapeutics for defective lung defenses. In this proposal, we will develop collaborative, intellectual, and methodological resources for the study of rare diseases of the airways. Finally, the consortium plans to establish training programs in rare airways diseases, and develop regional and internet-based networks to provide information about such rare diseases to the patients, medical professionals, and lay public for education, referral, and recruitment of study subjects.