Birt-Hogg-Dube syndrome (BHD) is a rare autosomal dominant condition resulting in the formation of lung cysts in more than 80% of patients. These lung cysts can frequently rupture leading to air leakage around the lungs and causing lung collapse (spontaneous pneumothorax). Patients with BHD can have multiple spontaneous pneumothoraces in their life. The lung cysts in BHD can expand in size in a low pressure environment, such as air travel. This could theoretically place patients with BHD at a higher risk for pneumothorax during air travel. However, this question has not been studied for patients with BHD. This study aims to investigate the relationship between air travel and the risk of developing a pneumothorax in patients with BHD.
This study is questionnaire-based and involves patients with BHD completing an online survey. The survey should take approximately 15 minutes to complete. The information obtained from the questionnaire will be stored electronically in a password-protected database, and will be used to calculate the risk of pneumothorax related to air travel in patients with BHD. Further details about the study, including access to the study questionnaire, are provided in the link below:
Please click on the link above to complete the survey. Your participation in the study is much appreciated. For any questions or concerns about participating, please contact Elizabeth Kopras at firstname.lastname@example.org.