Familial Pulmonary Fibrosis Study

Study objectives

The purpose of this study is to investigate inherited genetic factors that play a role in the development of familial pulmonary fibrosis and to identify a group of genes that predispose individuals to develop pulmonary fibrosis. Finding the genes that are associated with pulmonary fibrosis is the first step to develop better methods for early diagnosis and improved treatments. The overall hypothesis is that inherited genetic factors predispose individuals to develop pulmonary fibrosis.

Who should apply?

To be eligible for this study you must have at least 2 members of your family diagnosed with Idiopathic Interstitial Pneumonia (IIP). You may be included in this number.

• For affected individuals, we confirm your diagnosis by reviewing your medical records (such as chest CT scans, pulmonary function tests and biopsy results if applicable). We also ask for a history questionnaire to be filled out and obtain a sample of blood or tissue for genetic studies.
• Unaffected first-degree family members (parents, siblings, children) are screened with a questionnaire and a blood sample is obtained for genetic studies. Some members may be requested to undergo a high-resolution CT (HRCT) scan if they meet certain criteria.
• Records are requested on deceased family members who carried the diagnosis of pulmonary fibrosis.

Participating Sites

National Jewish Health – Not Currently Recruiting
1400 Jackson Street, F107
Denver, CO 80206

Contact: Janet Talbert, MS, CGC - Certified Genetic Counselor
1-800-423-8891 ext. 1022
talbertj@njhealth.org

T-1218 Medical Center North
Vanderbilt University Medical Center
Nashville, TN 37232-2650

Contact: Cheryl Markin - IPF Study Coordinator
1-888-898-1550
Cheryl.Markin@Vanderbilt.edu

Landspitali University Hospital, Reykjavik, Iceland

Investigators

Principal Investigator

• David Schwartz, MD, Principal Investigator,  National Jewish Health

Physician Scientists

• Kevin K. Brown, MD, National Jewish Health

• Gregory P. Cosgrove, MD, National Jewish Health

• Tim Bedient, MD, National Jewish Health

• Roland M. du Bois, MD, National Jewish Health and National Heart & Lung Institute, Imperial College

• Marvin Schwarz, MD, University of Colorado Denver

• Mark P. Steele, MD, Duke University

• James E. Loyd, MD, Vanderbilt University School of Medicine

• Gunner Gudmundsson, MD, Landspitali University Hospital, Reykjavik, Iceland

Radiology

• David Lynch, MD, National Jewish Health

• Jules Whiteman, MD, National Jewish Health

• Deb Dyer, MD, National Jewish Health

• Joyce Schroeder, MD, National Jewish Health

Pathology

• Steve Groshong, MD, PhD, National Jewish Health 

• Carlyne Cool, MD, National Jewish Health

Study Coordination

• Dolly Kervitsky, RCP, CCRC, National Jewish Health

• Janet Talbert, MS, CGC, National Jewish Health

• Raven Kidd, CCRC, Duke University

• Cheryl Markin, MT, Vanderbilt University

Data Analysis

• Tasha Fingerlin, PhD, University of Colorado Denver

• Nathan Kummer, National Jewish Health

Laboratory

• Max Seibold, PhD, National Jewish Health

• Leah Luna, PhD, National Jewish Health

• Jennifer Cotter, MS, National Jewish Health

• Elissa Murphy, MS, National Jewish Health