The Genetic Disorders of Mucociliary Clearance Consortium exists to bring together physicians and patients for the sake of Mucociliary Clearance Diseases research. Learn more about joining our registry. Research offers no guarantees, but research cannot move forward without your help. Every active role a patient takes may possibly play a part in discovering new groundbreaking research and finding new treatments.

Why is my participation important?

Patients who have Mucociliary Clearance diseases are often recognized late, because definitive testing is not always readily available. Treatment of these disorders is highly variable, since their clinical pathogenesis and treatment are not well-defined. We need to learn more. We need your help.

The Genetic Disorders Of Mucociliary Clearance Consortium is a clinical research network created to improve the diagnostic testing and treatment of rare airway diseases, including primary ciliary dyskinesia (PCD), variant forms of cystic fibrosis (CF), pseudohypoaldosteronism (PHA), and now idiopathic bronchiectasis and NTM pulmonary disease.

What can I do?
With your help and participation in the consortium, we expect that we will develop a consistent, evidence-based approach to the evaluation of individuals with chronic airway diseases will yield more precise diagnoses, better standards of clinical care, and advance new and effective treatments.

Headlines

WRAL.com: Diagnosing rare lung disorder is key to treatment
Although as many as 25,000 people in the United States live every day with primary ciliary dyskinesia, a chronic lung problem, only as estimated 10 percent are properly diagnosed. Read Article >

RDCRN Contact Registry

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Research offers no guarantees, but research cannot move forward without your help. Every active role a patient takes may possibly play a part in discovering new groundbreaking research and finding new treatments.

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