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

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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

Health Care Transition Resources

Author: Ann Garcia and Grace O'Connor - Patient Advocates, Adult Down Syndrome Center

The resources below can be used by individuals with Down syndrome, their families and caregivers, and their health care providers during the transition from pediatric to adult health care.  G

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-

Health Care Resources for Adults with Down Syndrome

Author: Down Syndrome Medical Interest Group - DSMIG

The DSMIG Health Care Resources for Adults with Down Syndrome page linked below contains practice guidelines, reviews, and research articles on adult health, health utilization, morbidity, and mortali

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

Tips for Communicating with a Patient with Intellectual Disabilities

Author: Center for Inclusive Health - Special Olympics

The resource linked below shares tips for communicating with patients with intellectual disabilities. As the tips indicate, the most important thing to remember is to communicate with the patient firs

A Center for Adults and Adolescents with Down Syndrome

Author: Chicoine, McGuire, Dominiak, Bilodeau, & Chicoine

An article written to celebrate the 20th anniversary of the opening of the Adult Down Syndrome Center of Advocate Lutheran General Hospital and Advocate Medical Group

Development of a Clinic for Adults With Down Syndrome

Author: Chicoine, McGuire, Hebein, Gilly

This is an article published in the journal Mental Retardation in 1994.

The Pattern of Malignancies in Down Syndrome and Its Potential Context with the Immune System

Author: Satge & Seidel - Frontiers in Immunology (2018)

Abstract The immune surveillance theory of cancer posits that the body's immune system detects and destroys randomly occurring malignant cells. This theory is based on the observation of the i

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

Estimation of the Number of People with Down Syndrome in the United States

Author: de Graaf, Buckley, & Skotko - Genetics in Medicine (2016)

Abstract: Purpose:  An accurate accounting of persons with Down syndrome (DS) has remained elusive because no population-based registries exist in the United States. The purpose of this study

Low Risk of Solid Tumors in Persons with Down Syndrome

Author: Hasle, Friedman, Olsen, & Rasmussen - Genetics in Medicine (2016)

Abstract Purpose:  The aim of this study was to investigate cancer incidence in a large cohort of persons with Down syndrome.  Methods:  Down syndrome was identified from th

Morbidity and Medication in a Large Population of Individuals with Down Syndrome Compared to the General Population

Author: Alexander, Petri, Ding, Wandel, Khwaja, & Foskett - Developmental Medicine and Child Neurology (2015)

Abstract Aim: The aim of this study was to describe the incidence of morbidities and the prevalence of medical prescriptions in a large Down syndrome population. Me

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

Supporting a Happy, Healthy Adolescence for Young People with Down Syndrome and Other Intellectual Disabilities: Recommendations for Clinicians

Author: Baumer & Davidson - Current Opinion in Pediatrics (2014)

Abstract Purpose of Review:  To review clinical updates and current healthcare issues for adolescents with Down syndrome and intellectual disabilities, including behavioral, social, and emoti

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

The Guide to Good Health for Teens & Adults with Down Syndrome

Author: Brian Chicoine, MD & Dennis McGuire, PhD - Book (2010)

Publisher's Book Description: The authors of the bestselling  Mental Wellness in Adults with Down Syndrome  turn their attention to the physical health of teens and adults wi

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