The Pulmonary Fibrosis Foundations (PFF)’ Patient Registry is providing valuable data to support pulmonary fibrosis research, as evidenced by multiple presentations at the 2019 American Thoracic Society (ATS) conference, held May 17–22 in Dallas, Texas.
The PFF Patient registry, launched in 2016, is a comprehensive collection of patient data from across the United States. Pulmonary fibrosis (PF) patients seen at hospitals and clinics participating in PFF’s care center network (CNN) are included in the registry.
Currently, the registry contains data from more than 2,000 patients at 42 CNN sites. Patients also can choose to provide a blood sample for future research.
“The PFF Patient Registry is an incredibly powerful research tool,” Kevin Flaherty, MD, said in a press release. Flaherty is chairman of the PFF Care Center Network and PFF Patient Registry Steering Committee.
“Using Registry data, biosamples and images, scientists can benchmark care and draw conclusions about how pulmonary fibrosis affects individuals,” Flaherty said.
Two research posters and two oral presentations were given at the 2019 ATS Conference, presenting results using data from the PFF registry.
In the poster titled “Patient Factors and Disease Severity Impact Cough-Specific Quality of Life in Patients with Interstitial Lung Disease,” researchers analyzed registry data and found a strong correlation between cough and lung function impairment in PF patients. The team suggested that cough could serve as a strong predictor of PF severity.
In the poster “Clinical Phenotypes Using Cluster Analyses Predicts Homogeneous Outcomes in the Pulmonary Fibrosis Foundation Registry,” scientists from the University of Chicago and University of Michigan identified four distinct patient subgroups based on demographic, clinical, serological, and lung function data. According to the team, this information can help in the development of more targeted therapies.
In the oral presentation titled “Racial Differences in Age at Diagnosis and Mortality in the Pulmonary Fibrosis Foundation Registry,” researchers from the Universities of Chicago and Michigan showed that African-Americans are diagnosed with PF about a decade earlier than patients of European-American origin. Despite this, there was no difference in transplant-free survival times and mortality rates between the two races.
Finally in another oral presentation, “Effects of Anticoagulation on Survival in Interstitial Lung Disease: An Analysis of the Pulmonary Fibrosis Foundation Registry,” a team led by researchers from Inova Fairfax Hospital in Virginia found that PF patients who need anticoagulants (therapies to prevent blood clots) were more likely to die or to need a lung transplant. Furthermore, researchers noted that patients using the anticoagulant warfarin (sold under several brand names) had a higher risk of mortality than those using direct-acting oral anticoagulants.
Thus far, according to the PFF, 23 studies representing more than $30 million in research funding have been developed using data from its patient registry.