Primary ciliary dyskinesia
Other Names for this Disease
- Ciliary dyskinesia primary
- Immotile cilia syndrome
- Polynesian bronchiectasis
On this page
- How to Get Involved in Research – A video developed by GARD Information Specialists that explains how you can find out about research for a rare disease.
- ClinicalTrials.gov lists trials that are studying or have studied Primary ciliary dyskinesia. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- The Genetic Disorders Of Mucociliary Clearance Consortium is a network of four U.S. centers (University of North Carolina at Chapel Hill, Washington University in St. Louis, University of Washington, and University of Colorado) that are collaborating in the diagnostic testing, genetic studies, and clinical trials in patients with impairments in mucociliary clearance, focusing on primary ciliary dyskinesia, cystic fibrosis, and pseudohypoaldosteronism. Ultimately, this group hopes to better define the clinical pathogenesis of these important airway diseases, improve or expand diagnostic testing, and develop new and effective treatments. To read more about this consortium and their involvement with primary ciliary dyskinesia and Kartagener syndrome, click on the above link.
- The Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) has created a patient registry for individuals that have rare airway diseases. You can learn more about the patient registry by clicking on the GDMCC link.
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.