We are delighted to welcome the publication of the Scottish Standard Care Pathway for Babies Born with Down’s syndrome and pleased to have collaborated with our colleagues across the NHS community in Scotland in developing this critical resource. The pathway is intended to guide the initial care for a newborn baby with a diagnosis of Down’s syndrome. It is intended for use by all health professionals involved in the care of babies with Down’s syndrome across Scotland . Having a pathway in place means health professionals can have the confidence in sharing the news that the baby has Down’s syndrome, using the right language. It will also improve their understanding around caring for babies born with Down’s syndrome and supporting them and their parents through the neonatal period.
Down Syndrome Regression Disorder (DSRD) is a term used to describe the sudden significant deterioration/loss of previously acquired motor, language and behaviour skills, most often preceded by a potential emotional or environmental trigger, such as a change in school or family circumstances not explained by autism or dementia. Although some therapies have been tried and some are still under research, no definitive treatments have been approved.
This disorder is a separate entity to dementia and to autism – however, poor awareness amongst professionals of DSRD along with some of the overlap of symptoms with autism and dementia, has meant that little is known about the true incidence and therefore management of it.
Down’s Syndrome Scotland are very aware of individuals with Down’s syndrome that appear to regress and families are concerned and confused as to why there doesn’t seem to be any explanation of why this has happened. The condition was also a significant area of discussion at this year’s World Down Syndrome Congress which highlighted that it is still not well understood and there is limited awareness and understanding amongst healthcare professionals.
We are therefore pleased to share details of a UK study which hopes that by identifying the number of individuals with DSRD in the United Kingdom, it will help to improve knowledge and awareness of this condition and in turn, will lead to research on the management of this condition, in the UK, in the future.
A survey will look at the numbers of people aged between 10 – 45 years old who may have Down Syndrome Regression Disorder (DSRD). i.e. individuals that have a loss of previously acquired skills not associated with a diagnosis of autism or Alzheimer’s disease.
The research team are gathering information, including a detailed survey of symptoms, to build a clearer picture of how many people may be affected and will be looking to use this information to demonstrate the need for more awareness, education and research into this specialised but really important area.
The online survey is being conducted by Drs Rachamim and Seenivasan and should only take around five minutes to complete.
The questions are aimed at identifying any potential triggers like difficult experiences and challenging issues that the young person has encountered in the past.
In the United Kingdom, the exact occurrence of this condition remains unknown. A series of symptoms and triggering factors have been developed recently, by researchers and clinicians, that are very helpful in potentially identifying this condition. The survey questions relate to these series of symptoms and triggers that could possibly help in identifying DSRD.
Further information about the study can be found by clicking here: Participant Information Sheet
Click here to take part in the survey: DSRD – Delphi Survey (parents/carers version)
About the research team
Dr Ella Rachamim
Specialist doctor in Community Paediatrics,
Edgware Community Hospital,
Barnet (Royal Free Hospital Trust)
Dr. Abinaya Seenivasan
ST5, Paediatric Neurology GRID,
Royal Manchester Children’s Hospital.
Scottish Disability Sport have introduced their first ever national survey and would like to hear from adults aged 16+ living with a disability or long-term condition in Scotland.
Results from the survey will be used to raise awareness and address inequalities experienced by people living in Scotland with a disability or a long-term health condition when trying to be more physically active.
Take part in the survey before Sunday 8th December.
You can find out more and access the survey here: Scottish Disability Sport National Survey 2024
Researchers from the London School of Hygiene & Tropical Medicine (LSHTM) with funding from the Down’s Syndrome Research Foundation UK are looking for participants to take part in research exploring the menstrual health of teenagers with Down’s syndrome in the UK.
Periods can be a confusing and challenging time for any teenager, and girls and young women with Down’s syndrome may have additional needs and experiences. To help better understand these needs the research team are conducting an anonymous (private) online survey to learn more about how girls and young women with Down’s syndrome and their families prepare for and manage their periods.
If you are the caregiver of a girl or young woman aged 10-19 with Down’s syndrome you can participate, even if they haven’t started their periods yet.
You can access the survey at this link: Menstrual Health Survey
The research team encourage participants to complete the survey on a laptop using the Google Chrome browser.
Click here to learn more about research and the team leading this study.
With funding from the Motability Foundation, Mencap are inviting adults (age 18+) with a learning disability who live in the UK to participate in their research project about public transport.
The Big Public Transport Survey was co-produced with people with a learning disability and asks questions about things that are important to them, including how public transport barriers impact on people’s wellbeing, access to community and access to paid work.
The survey is formatted in Easy Read and includes audio clips to listen to questions out loud.
You can access the survey online at this link: Big Public Transport Survey or email research@mencap.org.uk if you would like a paper copy of the survey instead.
Mencap will write a report about what they find out and Mencap hopes that the findings will help us all to provide better support to people with a learning disability.
For enquiries or more information about the survey including Easy Read resources and questions and answers, please click here or email research@mencap.org.uk.
Researchers at the Tizard Centre, at the University of Kent are looking for participants to take part in a research study that aims to explore the knowledge and experiences of the Criminal Injuries Compensation Scheme (CICS) of professionals, staff carers and/or family carers of people with learning disabilities.
You don’t have to have any particular knowledge or previous experience to complete the survey. The researchers are interested in everyone’s views.
Participants wanted:
Are you a carer for a person with a learning disability?
Are you a member of staff that supports people with learning disabilities?
Are you a professional that has worked to support a person with a learning disability?
Are you based in England, Wales or Scotland?
Participants will be asked to complete an anonymous online survey which should take approximately 15 minutes to complete.
Please click here to register to take part and access more information about the study, including project objectives, participant consent and contact details for the project team.