The Pulmonary Fibrosis Foundation has created an online Clinical Trial Finder to help pulmonary fibrosis patients search for trials to enroll in.
Foundation officials said the site allows patients to check out more than 100 trial possibilities. The studies are aimed at evaluating treatments for PF, with the hope that some are effective enough to obtain regulatory approval.
Before the trial finder site surfaced, the process of finding trials a patient could participate in could be long and strenuous.
“Getting information has been the hardest thing,” Bill Burke, a pulmonary fibrosis patient who is a support group leader from Williamsburg, Va., said in a press release. “Before this, it was pretty impossible to search for clinical trials.”
The trial finder allows patients to filter trials by category and location. The information comes from a National Institutes of Health service repository called www.clinicaltrials.gov.
By making it easier and faster for patients to access this information, the Pulmonary Fibrosis Foundation hopes to improve patient enrollment in clinical trials. Another goal is to provide researchers with data that helps them continue studying the complexity of the disease, including how much its course can vary.
“We want to empower patients to actively participate in identifying clinical trials,” said Dr. Harold R. Collard, the foundation’s senior medical advisor of research development.
The trial finder can be found here and on the PF Health app, which the foundation created in partnership with monARC Bionetworks. The app enables patients and caregivers to keep closer track of symptoms so they can manage the disease better. It also allows them to obtain the foundation’s latest news and information. And they can use it to provide information that advances PF research.
Foundation officials said the trial finder and app are the first steps the organization is taking toward creating a PFF Therapeutics Network to improve the lives of all those affected by PF.
Earlier this year, the foundation announced plans to expand its national PFF Care Center Network. Since 2013, the network has grown from nine to 45 medical centers nationwide. Each is staffed with experts in the care and treatment of patients with lung-scarring diseases.
Other foundation goals include expanding a national information repository known as the PFF Patient Registry, to increase understanding of PF, improve the disease’s diagnosis and treatment, boost participation in PF research, and speed up the dissemination of information about the disease.