Down syndrome regression disorder (DSRD) is a complex and rare condition that affects some individuals with Down syndrome, typically during adolescence or early adulthood. Individuals who are younger than 10 years or older than 30 years are very rarely diagnosed with DSRD. It is characterized by a sudden or gradual loss of previously acquired skills, including speech, motor abilities, social engagement, cognitive function, and more. The regression can be accompanied by changes in behavior, increased anxiety, depression, or withdrawal from activities and interactions.
It is currently unknown how many people with Down syndrome experience DSRD or what puts some people at risk. A top priority is to develop better tools to screen and diagnose DSRD. These tools can help identify people who need further diagnosis and treatment, identify risk factors, and measure whether people get better with treatment.
We are now recruiting for our Down Syndrome Regression Study!!
Our study aims to develop and validate a new screening questionnaire, the Down Syndrome Regression Rating Scale (DSRRS),
a novel test to improve detection and assessment of Down syndrome regression disorder.
We are looking for diverse caregivers of youth with Down syndrome aged 10 - 30 who have and have not experienced this condition, and health care providers to:
- Read and give feedback about questionnaire items over 3 – 4 one-on-one interviews.
- Share your unique journey and insights.
- Help refine our understanding of Down syndrome regression disorder.
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Have questions about Down Syndrome Regression Disorder?
Below, you will find links to specialized organizations, medical professionals, new research and publishings, and parent communities who can provide support and understanding. Our goal is to provide you with the knowledge and tools needed to help your family thrive!
National Down Syndrome Society (NDSS) has provided a wonderful page devoted to providing more resources and information about Down Syndrome Regression Disorder. Check out the link below to learn more:
Scientists and physicians from the Crnic Institute at the University of Colorado, Children’s Hospital Colorado, and Children’s Hospital Los Angeles have teamed up to investigate potential treatments for Down Syndrome Regression Disorder (DSRD). See the link attached below for more details:
Linda Crnic Institute DSRD Clinical Trials
Down Syndrome Medical Interest Group (DSMIG) has published an article and webpage to explain DSRD in detail, and provide more resources for the public. The link is attached below:
DSMIG Regression in Persons with Down Syndrome: Current Consensus
Dr. Eileen Quinn started a Facebook group as a supportive community designed for families experiencing Down syndrome regression. It offers a space for connection, support, and access to valuable resources, empowering parents with guidance and encouragement. The Facebook group is linked below:
https://www.facebook.com/share/g/18aNgcDaW4/