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

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

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.

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