Frequently Asked Questions on Enrollment
in the Pulmonary Fibrosis  Research Registry

What is the Registry?
The Pulmonary Fibrosis Research Registry is a confidential database of individuals diagnosed with Pulmonary Fibrosis  established in 2001 by the Pulmonary Fibrosis Foundation. The Registry facilitates research initiatives, promotes the development of improved treatments and a cure for Pulmonary Fibrosis. The Registry employs procedures that ensure the most stringent confidentiality of participants. The Registry operates under the auspices of the Pulmonary Fibrosis Foundation Board of Directors and is guided by an Advisory Committee comprised of leaders in the medical, and scientific research communities. Individuals enrolled in the Registry have the ongoing opportunity to participate directly in clinical trials of new therapeutic approaches in addition to other research opportunities.

Who is Eligible to Enroll in the Registry?
Individuals of all ages who are diagnosed with Pulmonary Fibrosis are eligible and encouraged to enroll in the Research Registry.

How do I enroll in the Registry?
Simply fill out the Research Questionnaire and mail it to the Pulmonary Fibrosis Research Registry at the address on the front of the Questionnaire. The Questionnaire may downloaded from the Internet at www.pulmonaryfibrosis.org/form.pdf.  If you have any questions or need assistance in completing the Questionnaire, please call the Registry Coordinating Center at 312-587-9272. If you receive more than one copy of the Questionnaire, do not complete additional copies, but pass extras onto other  Pulmonary Fibrosis patients or to your physician.  If you know of others interested in enrolling in the Registry but do not have additional copies, please refer them to the Registry Website or have them call the Registry Coordinating Center for information.  

Who will have access to my name?
How confidential is this database?  
Your Questionnaire will go directly to the Registry Coordinating Center at the Pulmonary Fibrosis Foundation. 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 identity and personal information from researchers and organizations unless consent is granted by the Registry member. The database is kept under tight security at all times. This means that it is password protected and inaccessible from the Internet. Also, all hard copies of personal information are kept under lock and key.  Only the Registry Director and Coordinator have access to a member’s personal information.

How can my participation help promote Research?  
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.  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.  Each Registry participant will receive new Questionnaires periodically to keep information updated.   Participants who are invited to participate in research studies will always have the option to accept or decline.  If you meet the qualifications for a study and agree to participate, you will be asked to contact the clinical center conducting the trial.

If You Have Further Questions:

Please contact the Pulmonary Fibrosis Research Registry for more information.
You may call: 1-312-587-9272 or Email: breathe@pulmonaryfibrosis.org
Please visit our Website at:  www.pulmonaryfibrosis.org/registry.htm