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Smith-Magenis Syndrome Foundation UK

Connecting Families, Raising Awareness, Building Futures

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Research

Latest information on SMS, and related research.

person filling out a survey

Education Survey for Primary Carers in the UK

March 9, 2022 by Leeann Stevenson

The SMS Foundation is trying to build an accurate picture of education provision across the UK. We need this information to help us understand some of the issues that families face. This will help us identify what the problems are, and how we can work towards successful outcomes for young people with SMS. The survey …

Read moreEducation Survey for Primary Carers in the UK
OJRD logo

Caregivers’ experience of sleep management in SMS: research study published on Orphanet Journal of Rare Diseases

February 11, 2022 by Leeann Stevenson

We are delighted to announce that the first of two research articles for the Safe Sleeping project, commissioned by the SMS Foundation, has been published by the Orphanet Journal of Rare Diseases. The project aims to gain a better understanding of the predicaments faced by families and professionals around sleep in SMS. The outcome expected …

Read moreCaregivers’ experience of sleep management in SMS: research study published on Orphanet Journal of Rare Diseases

Impact of COVID-19 on SMS Population Survey

February 10, 2021 by Leeann Stevenson

This survey is being conducted by the Smith-Magenis Syndrome (SMS) Foundation UK with the purpose of improving our understanding of COVID-19 in people with Smith-Magenis Syndrome across the world. After collating the results and appropriate consultation with our scientific and clinical advisers, we intend to publish a summary of our findings. This is a piece …

Read moreImpact of COVID-19 on SMS Population Survey
presentation cover

UK Demographics Study

September 24, 2020 by Leeann Stevenson

The aim of this study is to provide a definitive demographic profile of syndrome diagnosis across the UK.  This is to assist the charity in:  Establishing the actual diagnosed population with Smith-Magenis syndrome. Incident rate is estimated at 1 in 15-25,000, which would suggest up to 4,500 people in the UK have SMS. Our membership database has identified …

Read moreUK Demographics Study
Graph showing sleep patterns in SMS

Melatonin Application Rejected by SMC

September 13, 2019 by Leeann Stevenson

The Scottish Medicines Consortium (SMC) has rejected the application to recommend prolonged-release melatonin (Slenyto®) as a treatment for insomnia in children with autism spectrum disorder and/or Smith-Magenis syndrome (SMS). The decision was based on uncertainty that this medicine would offer value for money to NHS Scotland. The wider implication is that the SMC are saying …

Read moreMelatonin Application Rejected by SMC
SMS Child asleep whilst up at counter

Sleep Safely – Your Help Needed!

March 14, 2019 by Leeann Stevenson

The SMS UK Foundation has commissioned a project to understand the requirements for sleeping safely and the potential solutions for this to happen. We need the help of our global SMS families. If we could capture the sleep experiences of every SMS family, or as many as possible, then we would have a significant body …

Read moreSleep Safely – Your Help Needed!

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