Pulmonary Fibrosis Foundation Community Registry

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18+
SponsorPulmonary Fibrosis Foundation

About this trial

Pulmonary fibrosis (PF) results from a diverse group of health conditions and affects the lives of patients (including those who are post lung transplant), caregivers and family members. The Pulmonary Fibrosis Foundation Community Registry will offer an online portal where participants can self-enroll and directly contribute information about their experience with PF to be compiled into a longitudinal data set for use by researchers.

Eligibility criteria

Qualifiers

Provision of signed and dated informed consent form online

Male or female, aged 18 or older

An individual diagnosed with PF or ILD, including those who are post lung transplant, or

An individual who has cared (currently or in the past) for an individual with PF or ILD, and / or

Disqualifiers

Primary residence or place of care is outside of the US.

Inability or unwillingness of a participant to provide informed consent or comply with study protocol.

Any condition or circumstance not listed above, which, in the opinion of the investigator, may pose additional risks from participation in the study, may interfere with the participant's ability to comply with study requirements or that may impact the quality or interpretation of the data obtained from the study.

Patients who were diagnosed with any of the below lung diseases. Similarly caregivers and family members associated with these diseases would be excluded.

Trial design

Treatments tested in this trial

  • Not listed

Trial groups

10,000 Participants
are grouped into 3 trial groups

Sponsors and collaborators

Pulmonary Fibrosis Foundation

Lead sponsor

University of Michigan

Collaborator