The Pulmonary Fibrosis Foundation (PFF) and the U.S. Food And Drug Administration will discuss data from a survey requested for the Patient-Focused Drug Development Meeting For Idiopathic Pulmonary Fibrosis, to be held on the 26th of September on the FDA’s White Oak Campus.
According to the information recently released by the PFF through PRNewswire, data from more than 1,100 patients have already been submitted to the FDA.
To the leading voice for the PFF, president Patti Tuomey, the FDA’s initiative is worthy of “wholehearted support” from the pulmonary fibrosis community, considering the “importance of direct patient participation,” he said.
Referring to the patients’ answers to the survey, PFF Chief Medical Officer Gregory P. Cosgrove revealed that 25 percent of participants indicated that current treatments they are currently being prescribed do not improve their condition — information that can be very helpful to the FDA’s work.
Patients also described their most common symptoms as “shortness of breath” (65%) and fatigue (21%), and revealed that those symptoms have an impact on their daily lives. “Fifty-one percent of patients said they cannot participate in regular sporting activities, 47% are unable to dance, 29% cannot garden, 19% cannot travel by airplane, 18% cannot walk up stairs and 13% cannot drive,” Cosgrove noted.
The survey was highlighted by PFF’s medical staff, PF leaders, and former FDA officials, and was designed not only to meet the objectives of the FDA’s meeting, but also to understand patients’ and families’ needs.
The survey will be available until the end of the year, and any PF patient or caregiver can participate.
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