This trial is active and currently recruiting.
How to Participate
For more information, please contact a study personnel at 1.855.609.0010 or complete the form below.
Who Can Participate
- regardless of cause
- aged 18-105 years
- who reads and understands English
- Anyone who is a primary supporter or caregivers of a person with PF
The information collected from the Registry participants will be submitted on the Registry intake questionnaire/consent form. Information that will be included is as follows:
- Informed Consent
- Contact information (primary, alternative, address, email, phone #)
- Cause of PF (if applicable)
- Medical Symptoms Related to PF (if applicable)
- Diagnostic tests
- Supplemental oxygen use
- Smoking history
- Family history
Patients with PF who consent enrollment in the Registry agree to be contacted by Registry personnel about opportunities for them to participate in research studies. Some of these studies (e.g., “Observing the Effects of Supplemental Oxygen on Patients with Pulmonary Fibrosis”) will be conducted by Dr. Swigris and his research team—these studies will be considered Registry-affiliated. Registry participants are free to enroll in any study they wish—whether Registry-affiliated or conducted by investigators not affiliated with the Registry—i.e., non-Registry-affiliated studies.
It is assumed the investigators conducting those studies will adhere to regulations governing the protection of human subjects in research. Consider a hypothetical example: an investigator in Michigan is conducting a study of the effects of oral honey on PF-related cough and would like Registry participants to consider enrollment. The investigator would petition the Registry and, if approved by the Registry Oversight Committee, Registry personnel would contact potentially eligible Registry participants to inform them of the study. The Registry participants would then decide whether or not to contact the investigator in Michigan to be considered for enrollment. The investigatory in Michigan would be responsible for discussing the study with any potential subject, obtaining informed consent and conducting the study. All of these fall outside the purview of the Registry or its personnel.