NCT03437486|Recruiting
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Sponsor study identifier
observational
750
1 country
1
Study Start
January 1, 2009
Actual (reported)Primary Completion
January 30, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
January 30, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
This a prospective, longitudinal study of first-degree family members of patients diagnosed with familial interstitial pneumonia (FIP). FIP is the familial form of idiopathic pulmonary fibrosis (IPF), which is defined as 2 or more bloodline relatives which have a diagnosis of idiopathic interstitial pneumonia (IIP). The most common form of idiopathic interstitial pneumonia in FIP families is IPF (approximately 70%). The inheritance pattern in FIP is consistent with autosomal dominant inheritance with incomplete penetrance. Therefore, individuals in this study have approximately 50% risk of carrying a disease-associated allele. The causative gene is currently only known approximately 20% of families. The main goal of this longitudinal study is to better establish the natural history of FIP and to identify risk factors for later development of symptomatic disease. The investigators' plan is to follow these at-risk individuals with yearly questionnaires and planned in person 2 year follow-ups through age 75 or until they develop symptomatic FIP.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
January 30, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
January 1, 2009
Actual (reported)June 16, 2017
Actual (reported)February 19, 2018
Actual (reported)January 30, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
January 30, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
clinical diagnosis of interstitial lung disease
by ATS/ERS criteria
Until anticipated study completion of 01-30-2030
Subjects asked to participate in this study will be unaffected family members of patients previously diagnosed with familial interstitial pneumonia (FIP) which is the familial form of idiopathic pulmonary fibrosis (IPF).
Inclusion Criteria: 1\) Bloodline members of an affected individual from a family in which two or more members of a family bloodline are known to have had proven Idiopathic Interstitial Pneumonia (IIP) and who have no known diagnosis of IIP or IPF
Vanderbilt University Medical Center
Nashville, Tennessee, 37232, United States
Blood, including DNA, plasma and serum, along with BAL fluid and transbronchial biopsies will be collected and used for biomarker studies.
Margaret Salisbury, MD
Vanderbilt University Medical Center
First Submitted
June 16, 2017
First Posted
February 19, 2018
Study Start
January 1, 2009
Actual (reported)Primary Completion
January 30, 2030
EstimatedIdiopathic Pulmonary Fibrosis Registry for Future Studies
Beneficial Effects of Pulmonary Rehabilitation for Idiopathic Pulmonary Fibrosis
Contact the study team to confirm eligibility.
Planned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
January 30, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
December 31, 2025
Record last verified: 2025-12
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Source: ClinicalTrials.gov.
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