Suspended

Specimen Analysis for Understanding Pulmonary Fibrosis

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Study Aim

This study aims to procure and analyze blood and tissue samples to understand pulmonary fibrosis in individuals with the condition, their family members, and healthy volunteers.

What is being collected

Data Collection

Collected at a single point in time - Cross-sectional
Who is being recruted

Albinism+27

+ Amino Acid Metabolism, Inborn Errors

+ Blood Coagulation Disorders

From 18 to 115 Years
+13 Eligibility Criteria
See all eligibility criteria
How is the trial designed

Cohort

Tracking disease incidence in order to identify risk factors and understand disease progression over time.
Observational
Study Start: June 2004
See protocol details

Summary

Principal SponsorNational Human Genome Research Institute (NHGRI)
Last updated: October 2, 2026
Sourced from a government-validated database.Claim as a partner

Study start date: June 9, 2004

Actual date on which the first participant was enrolled.

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.

NCT00084305
Principal SponsorNational Human Genome Research Institute (NHGRI)
Last updated: October 2, 2026
Sourced from a government-validated database.Claim as a partner

Protocol

This section provides details of the study plan, including how the study is designed and what the study is measuring.
Design Details

315 patients to be enrolled

Total number of participants that the clinical trial aims to recruit.

Cohort

These studies follow a group of individuals with common characteristics (such as a condition or birth year) over a specific period to study health outcomes or exposures.

Eligibility

Researchers look for people who fit a certain description, called eligibility criteria: person's general health condition or prior treatments.
Conditions
Criteria

Any sex

Biological sex of participants that are eligible to enroll.

From 18 to 115 Years

Range of ages for which participants are eligible to join.

Healthy volunteers not allowed

If individuals who are healthy and do not have the condition being studied can participate.

Conditions

Pathology

AlbinismAmino Acid Metabolism, Inborn ErrorsBlood Coagulation DisordersBlood Platelet DisordersEye DiseasesFibrosisHematologic DiseasesHemic and Lymphatic DiseasesHemorrhagic DisordersLung DiseasesMetabolic DiseasesMetabolism, Inborn ErrorsCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesNutritional and Metabolic DiseasesPathologic ProcessesPigmentation DisordersPlatelet Storage Pool DeficiencyRespiratory Tract DiseasesSkin DiseasesSkin Diseases, GeneticPathological Conditions, Signs and SymptomsEye Diseases, HereditaryAlbinism, OculocutaneousSkin and Connective Tissue DiseasesHypopigmentationLung Diseases, InterstitialBlood Coagulation Disorders, InheritedGenetic Diseases, InbornPulmonary FibrosisHermanski-Pudlak Syndrome

Criteria

8 inclusion criteria required to participate
Familial pulmonary fibrosis [defined as idiopathic pulmonary fibrosis in two or more first-degree relatives]
Healthy research volunteers by history and indicated tests (individuals without history of chronic pulmonary disorder, collagen vascular disease, or bleeding disorder)
Hermansky-Pudlak syndrome (diagnosed by paucity or deficiency of platelet dense bodies on whole mount electron microscopy or by genetic testing)
Idiopathic pulmonary fibrosis [defined by the American Thoracic Society/European Respiratory Society guidelines]
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5 exclusion criteria prevent from participating
Inability to give informed consent (excluded due to exposure of unnecessary risks)
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
Show More Criteria

Study Plan

Find out more about all the medication administered in this study, their detailed description and what they involve.
Treatment Groups
Study Objectives

3 intervention groups are designated in this study

This study does not include a placebo group 

Treatment Groups

Study Objectives

Primary Objectives

Study Centers

These are the hospitals, clinics, or research facilities where the trial is being conducted. You can find the location closest to you and its status.

This study has 1 location

National Institutes of Health Clinical Center

Bethesda, United StatesOpen National Institutes of Health Clinical Center in Google Maps
SuspendedOne Study Center