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.
Currently, Audrey Dearing (an MSc student in Genetic Counselling) is updating the records and contact details and it is hoped that if Professor Clarke and colleagues are successful with a funding bid to do trials into respiratory support, the new Rett Disorders Registry for the UK, as it will be known, will facilitate the recruitment of families to that trial. In the future, is it hoped it will be an effective way for any UK researchers to recruit families and patients to Rett-related research with minimum cost and bureaucracy.