Скачать или смотреть SMS research: Where we are and where we’re going (Cerebra Webinar)

In this webinar we will share the innovative SMS behavioural research that the SMS Foundation and Cerebra Network have led in partnership over the last ten years. We will hear from SMS families about their experiences of taking part in research and have open discussion about priorities for future research. We will share exciting news of a new lifespan SMS study, open to caregivers of all children and adults with SMS.
Presenters include:
Dr Caroline Richards, Associate Professor of Neurodevelopmental Disorders, University of Birmingham
Dr Stacey Bissell, Assistant Professor, School of Psychology, University of Birmingham
Mr Rory O’Sullivan, PhD Researcher, School of Psychology, University of Birmingham
Further information about two of the projects:

BEOND

The BEOND study is a large-scale survey that asks caregivers about different aspects of living with SMS, such as wellbeing, health outcomes, sleep, behaviour, and caregiver experiences. The study welcomes families of children and adults with SMS both in the UK and internationally, and the information collected will be used to address concerns raised by families. All families will receive an individualised feedback report of their questionnaire responses which can be used for educational and/or clinical use after taking part.
Learn more and take part: https://redcap.link/cnndbeond

Cerebra Sleep Study

The Cerebra Sleep Study includes an online survey (30 minutes), a telephone interview (1 hour), and a 10-day sleep assessment which can be completed at home. The study is open to children with SMS aged 4-15.5 years in the UK, and is looking at how sleep difficulties and daytime behaviours interact in rare genetic syndromes. Each family will receive an individualised feedback report that summarises their children’s sleep, daytime behaviour, and day-to-day functioning.

Learn more and take part: https://redcap.link/zlxnmii9