Analysis of Specimens From Individuals With Pulmonary Fibrosis

What this study involves

The registry does not currently label this study as recruiting. Ask about its status before planning a screening visit.

Study type

Observational

Phase

Not applicable / not listed

Age range

18 years - 115 years

Sex eligible

All sexes

Healthy volunteers

Not accepted

Participants

315 Actual

These are starting points, not an eligibility decision. The research team must review the full requirements.

About the research

The etiology of pulmonary fibrosis is unknown. Analyses of blood, genomic DNA, and specimens procured by bronchoscopy, lung biopsy, lung transplantation, clinically-indicated extra-pulmonary biopsies, or post-mortem examination from individuals with this disorder may contribute to our understanding of the pathogenic mechanisms of pulmonary fibrosis. The purpose of this protocol is to procure and analyze blood, genomic DNA, and specimens by bronchoscopy, lung biopsy, lung transplantation, extra-pulmonary biopsies, or post-mortem examination from subjects with pulmonary fibrosis. In addition, blood, genomic DNA, clinically-indicated extra-pulmonary biopsies, as well as bronchoscopy and post-mortem examination specimens may be procured and analyzed from relatives of subjects with hereditary forms of pulmonary fibrosis; blood, genomic DNA, and bronchoscopy specimens may be procured from healthy research volunteers....

Who may be able to participate?

The list below is the sponsor’s full registry wording. It can include conditions, prior treatment, test results and other requirements. A match in search does not mean you qualify.

• INCLUSION CRITERIA:

Individuals who are 18 years of age or older with any of the following:

• Idiopathic pulmonary fibrosis \[defined by the American Thoracic Society/European Respiratory Society guidelines\],
• Familial pulmonary fibrosis \[defined as idiopathic pulmonary fibrosis in two or more first-degree relatives\],
• Relatives of patients with hereditary pulmonary fibrosis,
• Hermansky-Pudlak syndrome (diagnosed by paucity or deficiency of platelet dense bodies on whole mount electron microscopy or by genetic testing),
• Pulmonary fibrosis associated with collagen vascular diseases or autoinflammatory disorders,
• Pulmonary fibrosis post-COVID-19 \[i.e., pulmonary fibrosis in an individual recovering from SARS-CoV-2 infection\], or
• Healthy research volunteers by history and indicated tests (individuals without history of chronic pulmonary disorder, collagen vascular disease, or bleeding disorder).

EXCLUSION CRITERIA:

Individuals with any of the following:

• Significant inhalational exposure to fibrogenic fibers or dusts or exposure to drugs associated with pulmonary fibrosis,
• Uncontrolled ischemic heart disease,
• Uncorrectable bleeding diathesis,
• Pregnancy or lactation (excluded due to exposure of unnecessary risks), or
• Inability to give informed consent (excluded due to exposure of unnecessary risks).

Study population

Patients with pulmonary fibrosis@@@@@@

Treatment, groups and participation

The registry may describe treatments and study duration without a complete visit calendar. Ask the study team for the exact schedule, procedures, risks, costs and alternatives. Keep your usual care plan unless your treating clinician tells you otherwise.

Assignment

Not reported

Masking

Not reported

What researchers are measuring

Outcome measures describe what is being studied. They are not proof that a treatment works.

Primary measures

Research locations (1)

The overall study status and a local site’s status can differ. Confirm that location’s availability before traveling.

1 locations

Study team and timeline

Lead sponsor

National Human Genome Research Institute (NHGRI)

Study start

Jun 9, 2004 Actual

Primary completion

Not reported

Study completion

Not reported

First posted

Jun 10, 2004 Estimated

Last updated

Nov 10, 2026 Actual

Official study contacts

No central contact is listed. Check the locations and the official record.