Pulmonary Fibrosis Foundation Patient Registry (PFFR)
The Pulmonary Fibrosis Foundation Patient Registry will collect data on at least 2,000 patients at approximately 40 clinical sites in the US. The Pulmonary Fibrosis Foundation Patient Registry will collect data on at least 2,000 patients at approximately 40 clinical sites in the US. Participants will be asked to complete patient reported outcome (PRO) surveys related to ILD symptoms and quality of life at the time of enrollment and during clinical follow-up visits (Appendix A – PRO Questionnaires). Each patient will donate approximately 30 mL of blood to the Biorepository, which will be separated into plasma, serum, RNA, and DNA.
• 18 years old or older
• Understand and sign the informed consent document
• ILD Diagnosis must be made / confirmed at a participating Registry center.
• The diagnostic evaluation must include, at a minimum, a medical history, physical examination, pulmonary function testing and a computerized tomography (CT) scan of the chest.
• If patients exhibit another pulmonary disease (such as emphysema or asthma), the primary disease must be ILD.
• Anticipated additional follow up at the Registry center within one year.
• Diagnosed with:
• Lymphangioleiomyomatosis (LAM)
• Pulmonary alveolar proteinosis (PAP)
• Cystic fibrosis (CF)
Interstitial Lung Disease (ILD), Idiopathic Pulmonary Fibrosis (IPF)