The HPS Network needs to locate HPS patients that participated in the phase III clinical trial of Pirfenidone at the National Institutes of Health. The drug Pirfenidone showed encouraging results in a recently reported Phase III study for those with idiopathic pulmonary fibrosis. Now, the drug company, Intermune, is re-applying for approval of Pirfenidone by the Food and Drug Administration (FDA).
The HPS Network is advocating that the FDA also allow the drug to be used to treat the pulmonary fibrosis of Hermansky-Pudlak Syndrome (HPS). To help make the case, the NIH must document how those who were in the drug trial are doing now. This will require a return trip to the NIH.
If you were in the Phase III study of Pirfenidone at the NIH, please contact the HPS Network at: 1 (800) 789-9HPS.