The Rare Diseases Clinical Research Network RDCRN

The RDCRN, a program of the Rare Diseases Office of the NIH, is funding 10 research consortia. One of the consortia is the "Genetic Diseases of Mucociliary Clearance Consortium" (GDMCC) which is funding 3 PCD research projects. The three projects are:

1. A Cross Sectional Study - Includes all ages. Currently Enrolling. (RDCRN#5902; NIH#NCT00323167)
   
2. A Longitudinal Study - For ages 5-18. Currently Enrolling. (RDCRN#5901; NIH#NCT00450918)
   
3. A Longitudinal Study - For ages 0-5. Currently enrolling. (RDCRN#5903;NIH#NCT00722878)
   

• Research Sites and Contacts
• About the Rare Diseases Clinical Research Network (RDCRN)
• More information about GDMCC Studies
• Register for RDCRN Patient Research Online
• Form to Register for RDCRN Patient Research by Mail/Fax
• Please notify Susan Minnix, RN (UNC research co-ordinator) when you have registered.
  
• Angel Flight Information - Angel Flight is available for RDCRN Studies

National Institute of Health

Other departments of the NIH also conduct research studies that are of interest to the PCD population. Below are a couple studies we are aware of; you can search ClinicalTrials.gov for other NIH research that may be of interest to you.

• Genetic Disorders of Mucociliary Clearance in Nontuberculous Mycobacterial Lung Disease (NIAID)
  
• Atypical Mycobacterium Study Link(NIAID)
  
• ClinicalTrials.Gov - A database of all NIH funded research in the United States