breathe for PCD

Strides & Needs


In 1991, the founder of the PCD Foundation was told that there would never be research done on the genes that cause PCD because it was too complex.  Today 38 genes have been identified.  Identifying these genes allows for better diagnoses and is critical for future therapies based on gene modifications.

Another big stride for PCD is the creation of clinical centers across the country.  Having clinical centers where PCD is a focus is necessary for people to be properly diagnosed, followed on a registry, and be able to participate in research.  When the PCD Foundation was getting started in 2002 there were no clinical centers for PCD.  There are now 29.

A HUGE stride for PCD is taking place!  There are currently two clinical trials specifically looking at treatments for PCD.  Up until now we have only borrowed from studies on other disorders.  One clinical trial is looking at using the antibiotic, azithromycin, as a preventative measure in smaller doses with the hope of delaying the colonization of pseudomonas.  The second clinical trial underway will be testing out a novel compound to be inhaled into the airways to help keep them hydrated in order to clear out mucus more effectively.   


Up until very recently, there was yet to be a single research drug study exclusively for PCD.  The treatments that are done for PCD patients are based on research for cystic fibrosis, not PCD.  These treatments may or may not be what is appropriate or best for the needs of those with PCD. From the words of the founder of the PCD Foundation, "We desperately need to grow the centers, get a registry going and get trials started."