Pulmonary fibrosis organization creates registry for research

By | October 19, 2018

The Pulmonary Fibrosis Foundation has launched its first phase of a patient registry with 2,000 patients on board.

The foundation also is inviting researchers to submit proposals to access data from the registry, which could aid in understanding the causes of pulmonary fibrosis, ways to help doctors improve diagnoses and discover new treatments.

Pulmonary fibrosis is a progressive debilitating lung disease which causes scarring in the lungs; there is no cure. More than 200,000 Americans have the disease, and 50,000 new cases are diagnosed annually.

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The importance of the registry is the ability to speed the path to the development of clinical trials by creating a pool of patients interested in participating.

The registry includes patient data such as age, gender, test results, medications, outcomes, how the diagnosis was made, high resolution CT scans and a repository of patient blood samples.

“The registry is an example of a critical open-access resource containing phenotypic clinical data and biospecimens that can be leveraged by investigators to enhance recruitment and retention of patients for clinical trials, as well as support ancillary or independent mechanistic studies to better understand the etiology (cause) of pulmonary fribrosis,” says James Kiley, MD, director of the Division of Lung Diseases at the National Heart, Lung and Blood Institute.

James Kiley, MD

James Kiley, MD

In conjunction with launching the patient registry, the Pulmonary Fibrosis Foundation also rolled out a new effort to attract emerging researchers into the program.

The initiative is called PFF Scholars and designed to support and enable promising researchers to obtain independent funding. The researchers will receive as much as $ 50,000 over two years, and applications now are being accepted. Candidates must commit to becoming an independent investigator in an interstitial lung disease-related field and must be a clinician or have a doctorate or other professional degree.

The Pulmonary Fibrosis Foundation accepts and reviews research proposals three times annually; more information is available here.

Joseph Goedert

Joseph Goedert

Goedert is senior editor of Health Data Management, a SourceMedia publication.

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