Celebrating 1 Year of the BHD Syndrome International Registry

We launched the BHD syndrome International Registry (BIRT) 1 year ago! BIRT is a patient registry for Birt-Hogg-Dubé syndrome (BHD). We hope to use the data to reach consensus on the diagnosis and management of BHD and, ultimately, to help researchers develop treatments or a cure.

We are delighted to have 239 active participants in BIRT. We would like to say a massive thank you to each and every one of you for signing up to BIRT. Your participation in the registry will truly make a difference to BHD research in the future. As BHD is so rare, it is often difficult to get enough data to make solid conclusions to some of the common questions about BHD. This includes finding out if other types of cancer such as colon or thyroid cancer are associated with BHD. Taking part in studies such as BIRT will help researchers gather enough data to answers these questions and find new treatments.

On our 1 year anniversary we are sending out a call to action to the BHD community to join the registry, strengthen our community and drive forward research into BHD.

How do I get involved?

Getting involved is simple.

1. Visit https://birt.healthie.net and fill out the registration form.
2. You should then be sent an email to activate your account.
3. Sign the consent form.
4. Complete the surveys (this does not need to be completed in one go).
5. If you encounter any problems during the registration process, please email us.

I’m already taking part, what can I do?

If you’ve already signed up to BIRT, there are still things you can do to help us spread the word! You can help us by telling your family and healthcare professionals about the registry. We have a letter you can use to tell your family members, and there is a leaflet advertising the registry to doctors.

We also know there are lots of people who have signed up, but either haven’t completed their registration or filled out a survey. If everyone who has signed up fills out the surveys, we would have data from almost 400 people. Data from this many people would allow us to make the data from BIRT accessible to researchers. This would be done through a strictly controlled process. Researchers would have to apply to us for access. Their application would be assessed by the BIRT working group which consists of BHD expert doctors and people with BHD. All data will be deidentified to ensure your personal information is safe. This means removing all data that could be used to identify a specific person such as name or email address.

We recently published an FAQ to answer some of the common questions about BIRT. We are happy to answer any questions you have about the registry by email.

Over the next month we will be sharing highlights from the year across Facebook and Twitter. We would also like to say a massive thank you to our partners, Pulse Infoframe for hosting BIRT and their support over the last year. We look forward to working with them to develop BIRT in the future.