The overarching goals of the Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) Administrative Core is to provide comprehensive and sustained administrative, logistical, and operational support for all investigators, team members, trainees, and our patient advocacy groups. These goals will lead to successful completion of projects that will advance our understanding of the genetic bases, pathophysiology and clinical course of rare, chronic suppurative respiratory disease, specifically primary ciliary dyskinesia and primary immunodeficiencies; improve diagnostic capabilities; and identify novel therapeutic targets and endpoints for clinical trials that will ultimately improve outcomes for these affected individuals.
The specific aims of the Administrative Core are: 1) To provide excellent and comprehensive operational and organizational administration of the Consortium; 2) Mandate and facilitate regular, meaningful communications and coordination between all collaborating investigators and institutions; 3) Establish and maintain strong, productive working relationships with collaborators, patient and stakeholder groups, the NIH and serve as a point of coordination with the biostatisticians, Rare Diseases Clinical Research Network and the Data Management and Coordinating Center; 4) Ensure and promote awareness of the GDMCC to the clinical, scientific, and relevant patient and stakeholder communities; and 5) Recruit and regularly communicate with an External Advisory Committee consisting of scientific, clinical, and patient-stakeholder representatives. By achieving these aims, the GDMCC will successfully continue to improve the outcomes of patients with primary ciliary dyskinesia and primary immunodeficiencies.
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