Pulmonary Fibrosis Foundation Community Registry
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.
∙ In order to be eligible to participate in this study, an individual must meet all of the following criteria:
• Provision of signed and dated informed consent form online
• Male or female, aged 18 or older
• Affected by PF as a member of at least one of the following cohorts:
‣ 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
⁃ A family member (defined as parent, full or half-sibling, or child) of an individual with PF or ILD.
• Has internet access and a valid email address.