PFF registry

Principal Investigator: Mary  Scholand
Keywords: IPF , Idiopathic Pulmonary Fibrosis , Pulmonary Fibrosis Department: Pulmonary
IRB Number: 00091936 Co Investigator:  
Specialty: Pulmonary
Sub Specialties: Pulmonary Fibrosis
Recruitment Status: Recruiting

Contact Information

Lisa Weaver

Brief Summary

The objective of this project is the development of a Pulmonary Fibrosis Foundation (PFF) Patient Registry that includes PFF Care Center Network (CCN) sites.

Specific Aims - Registry

This registry will accomplish the following specific aims.

  1. Create a cohort of well-characterized patients with interstitial lung disease (ILD) for participation in retrospective and prospective research.
  1. Collect clinically obtained data to support research in improving quality of life and outcomes of patients with ILD.
  1. Collect data on the differing patterns of clinical care for patients with ILD to support research into the impact of those patterns on outcomes (including quality of life, mortality, safety profiles and others).
  1. Collect baseline and longitudinal patient reported outcome (PRO) surveys for ILD research.
  1. Improve awareness of and facilitate enrollment into clinical trials and research studies.
  1. Gather data on healthcare utilization to be combined with clinical data in support of ILD research


The objective of this project is to develop the PFFR Biorepository from patient specimens obtained at PFF Care Center Network (CCN) sites.

Specific Aims

This PFFR Biorepository will accomplish the following specific aims:

  1. Create a collection of biologic samples from well-characterized patients with ILD for molecular, genetic, and biologic research.
  2. Correlate biologic specimens with individually-identifiable longitudinal clinical data and patient-reported outcomes for molecular, genetic, and biologic research.
  3. Provide biologic samples from patients with defined disease processes to investigators seeking to perform discovery studies in ILDs.


Inclusion Criteria

  1. 18 years old or older
  1. Understand and sign the informed consent document
  1. ILD Diagnosis must be made / confirmed at a participating Registry center.

a.   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.

b.   If patients exhibit another pulmonary disease (such as emphysema or asthma), the primary disease must be ILD.

  1. Anticipated additional follow up at the Registry center within one year.

Exclusion Criteria

  1. Diagnosed with:
  1. Sarcoid
  1. Lymphangioleiomyomatosis (LAM)
  1. Pulmonary alveolar proteinosis (PAP)
  1. Cystic fibrosis (CF)