BHD Syndrome International Registry (BIRT)
What is the BHD Syndrome International Registry (BIRT)?
The BHD Syndrome International Registry (BIRT) is funded and managed by the Myrovlytis Trust. BIRT is a patient-reported registry including information on the diagnosis, symptoms and management of BHD.
The data collected within this registry will facilitate research to further our understanding of BHD, enable the development of therapies or a cure, and put patients at the centre of research.
We envision a future in which we can cure or prevent the symptoms of BHD and believe that a BHD-specific registry will help us achieve that goal.
We have created a leaflet that can be printed to share information about the BHD Syndrome International Registry with patients. Download it here.
- Develop diagnostic and management guidelines
- Determine the prevalence of BHD.
- Determine if there are other manifestations associated with BHD (aside from those existing known in the skin, lung and kidney).
- Collect information on the type of kidney cancer most likely to develop in BHD.
- Collect information on the ongoing management of your symptoms (e.g. kidney scan type and frequency).
- Include information on genetic sequencing to determine if any particular variants are associated with particular manifestations.
- Collect lifestyle information to understand if environmental factors influence the treatment or management of BHD.
- Assess the quality of life of those living with BHD
- Use the registry as a database for clinical trials recruitment.
We are delighted to have partnered with Pulse Infoframe to launch the BHD Syndrome International Registry (BIRT).
Pulse Infoframe is a real-world evidence generation, health informatics and insights company that provides a technology and services platform designed to extract, curate, analyse and disseminate evidence-based conclusions that improve the quality of people’s lives.
We are not currently accepting requests to access the data held in the BHD Syndrome International Registry (BIRT).
This page will be updated in due course with information on how to request access to data and the data request process. To stay informed on when we will be accepting requests, please sign up to our newsletter here.
The Myrovlytis Trust thanks all the members of the BIRT Working Group for their input and time assisting the development and management of the registry.
Details of the working group will be added soon.