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 (more information coming soon!)
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. Join our Contact Registry!
Who Can Join the Contact Registry?
Anyone who is diagnosed with primary ciliary dyskinesia (PCD), variant forms of cystic fibrosis (CF), and pseudohypoaldosteronism (PHA) can join the Contact Registry. Idiopathic bronchiectasis or NTM pulmonary disease will become available on the Contact Registry in the coming weeks!
How does the Contact Registry Work?
After you have read and agreed to the Authorization, the Registry form will appear on your screen. This form asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.
Once you have entered and submitted this information online, the data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.