Sponsor study identifier
Secondary identifiers
NIH
observational
104
1 country
1
Study Start
August 2015
Date type not reportedThis date has not been verified as actual or estimated.
Primary Completion
August 2019
Actual (reported)Study Completion
August 2019
Actual (reported)The aim of this study is to conduct survey-based assessments for the safety of air travel in patients with Birt-Hogg-Dube syndrome (BHD). The study will enroll patients through the clinic network at Rare Lung Disease Consortium (RLDC) and through the BHD foundation website. Patients will have access to the questionnaire via REDCap (an online data management system) and each patient will be provided with a link to complete the survey. The investigators plan on enrolling approximately 100 patients with BHD for the purpose of this study. Secondary aims of this study include further characterization of the clinical aspects of disease and to establish a contact registry for these patients, in order to facilitate future studies.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
August 2019
Actual (reported)Click on a node to explore related trials.
Some registry-reported names shown below are not yet linked in this graph.
Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
August 2015
Date type not reportedThis date has not been verified as actual or estimated.
January 5, 2017
Actual (reported)February 2, 2017
Actual (reported)August 2019
Actual (reported)August 2019
Actual (reported)January 31, 2024
Actual (reported)Number of Patients With Birt-Hogg-Dube Syndrome Who Experienced Spontaneous Pneumothorax During or Within 24 Hours Following Air Travel
The investigators will measure the number of pneumothoraces that occur either during air travel, or within 24 hours of air travel among patients with Birt-Hogg-Dube syndrome. The incidence of air travel related pneumothorax will be calculated by dividing the number of pneumothoraces to the total number of flights undertaken by the entire cohort.
During air travel or within 24 hours following air travel
Number of Patients With Birt-Hogg-Dube Syndrome Who Experience a Spontaneous Pneumothorax
3 years
Number of Patients With Birt-Hogg-Dube Syndrome Who Experience Recurrent Pneumothorax Following Pleurodesis
3 years
Registry-reported names are shown in full. Names without a link have not yet been matched to a Syfrah profile.
All patients with a confirmed diagnosis of Birt-Hogg-Dube syndrome are eligible to participate in this study.
University of Cincinnati
Cincinnati, Ohio, 45267, United States
Nishant Gupta, MD
University of Cincinnati
104 participants (actual enrollment reported by the registry).
First Submitted
January 5, 2017
First Posted
February 2, 2017
Study Start
August 2015
Date type not reportedThis date has not been verified as actual or estimated.
Cardiotoxic Effects of Chemotherapy in Patients With Sarcomas: A Two and Three-dimensional Echocardiographic Speckle Tracking Imaging Study
Contact the study team to confirm eligibility.
Primary Completion
August 2019
Actual (reported)Study Completion
August 2019
Actual (reported)Last Updated
January 31, 2024
Results First Posted
January 31, 2024
Record last verified: 2024-01
Download the complete ClinicalTrials.gov record imported by Syfrah, including fields not shown in this page. The registry may contain a newer revision.
Source: ClinicalTrials.gov.
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