Research Registry

The Pulmonary Fibrosis Foundation Registry, developed in  accordance with the recommendations of the World Health Organization, is a confidential database of individuals diagnosed with Pulmonary Fibrosis. The largest hurdle to advances in Pulmonary Fibrosis clinical research is finding a sufficient number of volunteers to participate in clinical studies. By establishing a database of thousands of people with Pulmonary Fibrosis and making it available to the Pulmonary Fibrosis research community, the Registry will promote the development of new therapies, and eventually a cure for Pulmonary Fibrosis.

Through the voluntary participation of registry participants, basic scientific questions about Pulmonary Fibrosis can be answered allowing the disorder and its impact on patients to be more thoroughly documented and understood. The Questionnaire, in itself, is a valuable piece of research material providing important data on Pulmonary Fibrosis. Until the Pulmonary Fibrosis Research Registry was created, there was no U.S. registry of individuals diagnosed with Pulmonary Fibrosis. An Advisory Committee comprised of leaders in the medical, and scientific research communities supervise the operation of the Registry.

Individuals enrolled in the Registry have the ongoing opportunity to participate directly in clinical trials of new therapeutic approaches. There is strict adherence to established confidentiality procedures that are intended to protect the identity of those who participate. The Registry is required to conceal a member’s personal information from researchers and organizations unless consent is granted by the Registry participant. The database is kept under tight security at all times. Individuals of all ages who are diagnosed with Pulmonary Fibrosis are eligible and encouraged to enroll in the Research Registry.

The Registry represents a great research asset for Pulmonary Fibrosis patients. This is due to the concerted efforts and cooperation of physicians and the lay community. As a patient diagnosed with Pulmonary Fibrosis, your participation in a clinical research study offers all patients renewed hope for effective treatments, a greater understanding of this disorder, and the possibility that a cure will soon be discovered. Imagine, you can do all this just by participating in the Registry. Simply fill out the Registry Questionnaire and mail it to the Pulmonary Fibrosis Research Registry at the address on the front of the Questionnaire. If you have any questions or need assistance in completing the Questionnaire, please call the Registry Coordinating Center at 1-312-587-9272 for more information. For more information, please see Frequently Asked Questions.

To enroll, download the Research Registry Questionnaire, complete and mail it to the address on the front of the Questionnaire. Click here to see Frequently Asked Questions Click here to download Research Registry Questionnaire