The PFF Community Registry collects self-reported data from patients, nonprofessional caregivers and biological family members via a secure 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 organization plans on conducting follow-up surveys at six-month intervals. “We will check in on them, ask them if anything has changed, including new medications, new treatments or if they’ve had any hospitalizations,” Speller said.
The organization will contact select individuals regarding options for optional sub-studies.
Researchers interested in examining a specific cohort of patients with PFF, such as military vets, can develop a survey in conjunction with the PFF Registry team and delve into gathering such information.
The new registry will complement the organization’s existing patient registry, known as the PFF Patient Registry, which was established in 2016. “It is currently run across 42 PFF Care Centers within the U.S.,” Speller said. “We’ve grown to 74 Care Centers most recently.”
The registry currently includes data from more than 2,000 PF patients.
The PFF Patient Registry collects anonymized data from PF patients that researchers can use to understand what causes the condition, improve diagnosis and care and pave the way for new treatments and a potential cure.
The registry contains data related to medications, medical outcomes and events, demographic data and other health conditions. “Between 2016 and 2018, patients were given an opportunity to consent to give a one-time blood sample,” Speller said. “Those blood samples have been wonderful in terms of research.”
“We have medical data, biosample data, and then high-resolution computed tomography (HRCT) images,” Speller said. The registry also includes patient-reported outcomes. “Patients have an opportunity to report on their quality of life every six months..”
The PFF has multiple research efforts, including the PRECISIONS study, which is investigating whether N-Acetyl-cysteine (NAC) is effective for some idiopathic pulmonary fibrosis patients with a specific genetic variant.
The organization has also established the Prognostic Lung Fibrosis Consortium (PROLIFIC), which brings together a variety of pharmaceutical companies united in bolstering drug development in pulmonary fibrosis.
Ultimately, the PFF’s focus on registries can help gather data to answer many questions about PF and ILD. “There are about 250,000 individuals affected by PF or ILD, with about 50,000 newly diagnosed each year,” Speller said.