The British Isles Rett Syndrome Survey (BIRSS) was established by Dr Alison Kerr at Glasgow University in 1982. Since 2005, it has been based at Cardiff University under the supervision of Professor Angus Clarke. Funded by Rett UK the main aim was to monitor the health of people with Rett syndrome to enhance the understanding of the natural history of the disorder throughout lifespan. This has enabled other research studies to be targeted but in the last few years BIRSS has been dormant as funding had expired.

Rett UK has now been in discussion with colleagues and with Professor Clarke about the future of BIRSS and the need for a robust registry for Rett syndrome in the UK which will help not only in our understanding of the natural history of the disorder but also in establishing a database from which to seek to recruit families for clinical trials. We should be able to bring you further news of the future of BIRSS shortly.