Assessment of Safety of Air Travel in Patients With Birt-Hogg-Dube Syndrome

University of Cincinnati

Status: Completed

Conditions: Birt-Hogg-Dube Syndrome

Treatments: Other: Non-Interventional Study

Study type: Observational

Funder types: Other; NETWORK; NIH

Identifiers

NCT03040115

U54HL127672 (U.S. NIH Grant/Contract)

RLDC5714A

Details and patient eligibility

About

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.

Enrollment: 104 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Adult, age 18 or older
• English literate
• Signed, dated informed consent; either given electronically or via paper form
• Diagnosis of BHD confirmed by either a) the presence of fibrofolliculomas/trichodiscomas on skin biopsy, or b) the presence of pathogenic FLCN mutations.

Exclusion criteria

• Inability to give informed consent

Trial design