A registry is a large database, containing information provided by patients on their condition. We hope in the initial stages to gather enough information to help inform the management of BHD, as well as provide information to help researchers.

One of the most common queries we receive at the BHD Foundation is whether other cancers are linked with BHD. There have been suggestions that this may be the case, but conclusive findings haven’t been made. This is largely because studies have been small – as a rare disease it is hard for clinicians to have enough patients to conduct large scale studies. We are hoping the new registry will overcome these obstacles and that research will benefit from this larger-scale approach.

This is a truly collaborative project. We are very grateful to our working group (clinicians and patients) for their continued help and advice.

To make the BIRT registry a success we need the BHD community to join and enter their data. We launch in March, and will have a dedicated zoom meeting to answer questions and help with any technical issues. It is an exciting time at the BHD Foundation, and we hope you can help to make this a success!

More information can be found here, and don’t forget to sign up for updates to be the first to hear about this and other projects we have planned.