We’d like to invite you to take part in our survey as part of a research study we are carrying out. It should only take around five minutes to complete.
A group of children and young people who have Down syndrome have been identified to have sudden significant deterioration in their motor, language and behaviour skills, most often preceded by a potential emotional or environmental trigger, such as a change in school or family circumstances. This is named as Down Syndrome Regression Disorder (DSRD) but there have been a number of different medical terms used in the literature which can make it harder for research. 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 DSRD.
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.
Our vision is that by identifying the number of children and young people 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.
Further information about the study can be found by clicking here.
Click here to take part in the survey or use the QR link below.
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.