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The Pulmonary Fibrosis Foundation (PFF) is commemorating the one-year anniversary of the PFF Community Registry, a research initiative that has successfully gathered data on pulmonary fibrosis (PF) and interstitial lung disease (ILD). With more than 1,600 participants, the Community Registry has become a valuable resource for researchers and medical professionals seeking to deepen their understanding of PF and ILD.
"The Community Registry is now reaching a critical mass, so that we can offer researchers more information to help further their understanding of PF," stated Joseph Lasky, MD, chief medical officer for the PFF.
The Community Registry is a database that relies on the collection of self-reported data through online surveys conducted every six months. It encompasses a diverse group of participants, including individuals who have been diagnosed with PF or ILD, including those who have had a lung transplant, as well as caregivers and biological family members of those with PF or ILD.
"There is no limit on the number of individuals who can join the Community Registry, and we are focused on growing it exponentially to reflect the significant population impacted by the disease," said Lasky. "Our goal is to increase diversity and ongoing engagement within the Registry, so that the data collected demonstrates the intricate nature of pulmonary fibrosis and can be utilized to improve outcomes for all patients." The Registry also allows the PFF to contact patients to refine information regarding new specific questions that arise, and to keep pace with patient experiences with care delivery.
The data collected through the Community Registry serves as a complement to the information gathered by the PFF Patient Registry, which began in 2016 and includes patient data provided by clinicians.
PFF Community Registry Crosses One-Year Mark with Over 1,600 Participants. (2023, July 26). Cision PR Newswire.