Help shape the future of TSC research by taking part in the BEOND Study

The BEOND Study is an international, long-term research project led by the Cerebra Network, a collaborative team of researchers across the UK working to improve the lives of people with neurodevelopmental conditions and rare genetic syndromes.

The BEOND study is now open to families living with TSC.

Parents/caregivers of children and adults living with TSC are asked to complete a survey that asks about a range of needs and abilities. The survey takes about 60 minutes to complete, which can be done online or via post.

Every family that takes part will receive a personalised feedback report which summarises their survey answers, putting the information back into their hands.

The survey will run for the next 20 years. Families are welcome to take part every couple of years to see how their answers have changed with time. By collecting data over many years, we hope to get a much better insight into development in TSC.

You can learn more and take part here: https://www.cerebranetwork.com/beond-tsc