BHD Syndrome International Registry – User Guide

We are delighted to announce the launch of the BHD Syndrome International Registry (BIRT). We want to collect as much information as possible about BHD so it is really important than as many people join the study as possible. You can find out more about the registry and it’s aims here. To help with the process, our partners Pulse Infoframe have created this step-by-step guide to registering and completing the surveys.

You can download the guide here as a pdf or as a word document.

If you wish to read the guide in a different language, please select your language by clicking ‘Other Languages’ at the top right of the screen and download the guide as a word document. We will also be launching the registry in French, German and Spanish in the coming months, and hope to expand to other languages in the future!

If you encounter any technical problems registering or completing the survey please email us with details of the problem and include the device and browser you have had the issue on and any screenshots of the problem if they are helpful.

We will also be holding drop-in zoom sessions over the next few weeks. If you are having trouble registering or have any questions about the registry, please drop in on zoom. Our zoom sessions are taking place at the following times:

  • Tuesday 12th April 2 – 3 pm UK time (9 – 10 am EST)
  • Saturday 23rd April 5 – 6 pm UK time (12 – 1 pm EST)

The link to join the zoom session will be circulated through our mailing list. To register for updates, please sign up here.

If you can’t make any of these times, please get in contact with us by email and we can arrange a time convenient for you.

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