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Caring for PCD
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PCD is a progressive disorder (gets worse over time) for which no cure currently exists.  There have been no clinical trials of therapies for PCD, so there are no ‘approved’ treatments at this time. Because PCD shares some features with a better known disorder for which there are many tested therapies (cystic fibrosis or CF), much of what is currently done for PCD care is very similar to the care provided for CF.  This is both good and bad for PCD: Good, because CF care focuses on preventing disease progression through aggressive treatment of infections, which is critical when no option for a cure is available.  But bad, as well, because PCD is not CF and we really don’t know that what works in CF care will work for PCD or that it is the best, most appropriate option for PCD.

As our patient population grows, we will be better positioned to do clinical trials and get the answers we need about best therapy options for PCD. To get the answers we need, we desperately need patients to participate in research and clinical trials. To learn more about how you can get involved in finding better treatments for PCD, contact us.

Until then, we support using the CF model of care, which is focused on preventing rapid progression of disease.  More details can be found here.

Additionally, we encourage individuals with PCD to be active participants in their own care by maintaining a healthy lifestyle.