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For people with Down syndrome, family members, caregivers and professionals.

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Assessment and Diagnosis of Down Syndrome Regression Disorder: International Expert Consensus

Author: Santoro et al. (2022) - Frontiers in Neurology

Abstract Objective:  To develop standardization for nomenclature, diagnostic work up and diagnostic criteria for cases of neurocognitive regression in Down syndrome. Background:  The

Evidence of Neuroinflammation and Immunotherapy Responsiveness in Individuals with Down Syndrome Regression Disorder

Author: Santoro et al. (2022) - Journal of Neurodevelopmental Disorders

Abstract Background:  Down syndrome regression disorder is a symptom cluster consisting of neuropsychiatric regression without cause. This study evaluated the incidence of neurodiagnostic abn

Health Supervision for Children and Adolescents with Down Syndrome

Author: Bull et al. (2022) - Pediatrics (American Academy of Pediatrics Publication)

In April 2022, a clinical report was published in  Pediatrics , a publication of the American Academy of Pediatrics. These pediatric guidelines are "designed to assist the p

Be Active Throughout the Day

Author: Adult Down Syndrome Center

Moving our bodies throughout the day can help us be healthy.

Alphabet Workout Challenge with Dr. Chicoine and Dr. Dominiak

Author: Adult Down Syndrome Center

Complete a workout made up of exercises assigned to each letter of Dr. Chicoine and Dr. Dominiak's names!

Alphabet Workout

Author: Adult Down Syndrome Center

Use this handout to create a workout by spelling your name, the day of the week, or another word or phrase of your choosing!

Medical Care of Adults with Down Syndrome: A Clinical Guideline

Author: Tsou et al. - JAMA (2020)

Abstract Importance:  Down syndrome is the most common chromosomal condition, and average life expectancy has increased substantially, from 25 years in 1983 to 60 years in 2020. Despite the u

Down Syndrome Disintegrative Disorder: A Clinical Regression Syndrome of Increasing Importance

Author: Rosso et al. - Pediatrics (2020)

Abstract Down syndrome disintegrative disorder (DSDD), a developmental regression in children with Down syndrome (DS), is a clinical entity that is characterized by a loss of previously acquired adapt

Co-Occurring Medical Conditions in Adults with Down Syndrome. Part II.

Author: Capone et al. - American Journal of Medical Genetics Part A (2020)

Abstract: Adults with Down syndrome (DS) represent a unique population who are in need of clinical guidelines to address their medical care. Many of these conditions are of public health importance wi

Ways to Be Active

Author: Adult Down Syndrome Center

This handout shows ways to incorporate physical activity and exercise into our daily lives.

Unexplained Regression in Down Syndrome: 35 Cases from an International Down Syndrome Database

Author: Santoro et al. - Genetics in Medicine (2019)

Abstract: Purpose:  An entity of regression in Down syndrome (DS) exists that affects adolescents and young adults and differs from autism spectrum disorder and Alzheimer disease.  M

Erin's Tips for Living a Healthy Lifestyle Video

Author: Adult Down Syndrome Center - Video

In the video below, Erin shares tips for living a healthy lifestyle. As Erin says, "Living a healthy lifestyle can be really hard," but her tips can help make it easier! 

Cancer Screening in Adults with Down Syndrome: A Proposal

Author: Rethore, Rousse, Satge - European Journal of Medical Genetics (2019)

Abstract Background : The specific distribution of cancers in Down syndrome (DS) calls into question the validity of screening policies for cancer surveillance as implemented for the general populatio

Catatonia in Down Syndrome: Systematic Approach to Diagnosis, Treatment and Outcome Assessment Based on a Case Series of Seven Patients

Author: Miles, Takahashi, Muckerman, Nowell, Ithman - Neuropsychiatric Disease and Treatment - 2019

Abstract Objective:  The goal is to expand our knowledge of catatonia occurring in adolescents and young adults with Down syndrome (DS) by describing the first prospective, consecutive, well-

Benefits and Harms of Mammography Screening for Women with Down Syndrome

Author: Alagoz et al. - Journal of General Internal Medicine (2019)

Abstract: Background:  Women with Down syndrome have a lower breast cancer risk and significantly lower life expectancies than women without Down syndrome. Therefore, it is not clear whether

Exercises You Can Do at Home

Author: Adult Down Syndrome Center

This visual shows pictures of and describes exercises you can do at home without exercise equipment.

Regression in Adolescents and Adults with Down Syndrome

Author: Chicoine & Capone - Chapter in Physical Health of Adults with Intellectual and Developmental Disabilities

Abstract: There has been a growing number of clinical case reports of regression in adolescents and adults with Down syndrome who have shown unexpected and severe regression in cognitive and adaptive

Co-Occurring Medical Conditions in Adults with Down Syndrome

Author: Capone et al. - American Journal of Medical Genetics Part A (2017)

Abstract: Adults with Down syndrome (DS) represent a unique population who are in need of clinical guidelines to address their medical care. The United States Preventive Service Task Force (USPSTF) ha

Fit 5 Fitness Cards and Videos

Author: Special Olympics - Resource

The website linked here contains downloadable cards and videos that feature Special Olympics athletes and provide visual demonstrations of endurance, strength, and flexibility exercises. There are exe

Breast Cancer Screening for Women with Down Syndrome

Author: Chicoine, Roth, Chicoine, & Sulo - Intellectual and Developmental Disabilities (2015)

Abstract: This study examined mammogram reports of women with Down syndrome (DS) treated in the largest medical facility specifically serving adults with DS in the United States. Records of 684 women

Catatonia in Down Syndrome: A Treatable Cause of Regression

Author: Ghaziuddin, Nassiri, & Miles (2015) - Neuropsychiatric Disease and Treatment

Abstract Objective:  The main aim of this case series report is to alert physicians to the occurrence of catatonia in Down syndrome (DS). A second aim is to stimulate the study of regression

Health Watch Table - Down Syndrome

Author: Developmental Disabilities Health Care Toolkit Advisory Committee - Toolkit for Primary Care Providers

The health watch table linked below contains recommendations for a number of areas of health for people with Down syndrome including otolaryngology, dental, cardiovascular, sleep, respiratory, gastroi

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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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