Pulmonary Fibrosis Foundation Patient Registry

The Pulmonary Fibrosis Foundation Patient Registry will collect data on at least 2,000
patients with interstitial lung disease (ILD) at approximately 40 clinical sites in the US.
The Registry is targeting enrollment of approximately 60% of the 2,000 ILD participants to
have idiopathic pulmonary fibrosis (IPF). The aim of the Registry is to create a cohort of
well-characterized patients with interstitial lung disease (ILD) for participation in
retrospective and prospective research

Eligibility Criteria

Inclusion Criteria:

1. 18 years old or older

2. Understand and sign the informed consent document

3. ILD Diagnosis must be made / confirmed at a participating Registry center.

1. 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.

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

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

Exclusion Criteria:

1. Diagnosed with:

1. Sarcoid

2. Lymphangioleiomyomatosis (LAM)

3. Pulmonary alveolar proteinosis (PAP)

4. Cystic fibrosis (CF)

5. Amyloidosis

Principal Investigator

Mark Hamblin, MD

Study Contact

Kimberly Lovell, 913-588-6067, klovell@kumc.edu

Estimated Completion Date

Monday, March 1, 2021

ClinicalTrials.gov #

NCT02758808
11/06/2017