The Pulmonary Fibrosis Foundation (PFF) has launched the PFF Community Registry to facilitate research on pulmonary fibrosis (PF) and interstitial lung disease (ILD).
The PFF Community Registry collects self-reported data from patients, nonprofessional caregivers and family members via an online portal. Participation is voluntary.
“There’s a research opportunity to see if there are any differences in how patients perceive their diagnosis and care relative to how physicians input that data within the medical chart,” PFF Registry VP Junelle Speller said.
The Pulmonary Fibrosis Foundation is enrolling individuals in the Community Registry, including lung transplant recipients and patients diagnosed with pulmonary fibrosis or interstitial lung disease, Speller said. The lung transplant group is a new cohort for the organization.
The organization plans on conducting follow-up surveys at six-month intervals. “We will check in on …