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Pneumonia and Respiratory Infections in Down Syndrome: A Scoping Review of the Literature

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

Abstract Pneumonia and respiratory infections impact infants and children with Down syndrome; pneumonia is a leading cause of mortality in adults with Down syndrome. We aimed to review the literature

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Sensory Processing and Down Syndrome

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

The Sensory System No one has a perfectly functioning sensory system. We all have sensory preferences and even sensory needs, each unique to how our central nervous system perceives and processes sens

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Clinical Characteristics of Individuals with Down Syndrome Deceased with COVID-19 in Italy - A Case Series

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

Abstract Background:  Persons with Down syndrome (DS) are presumed to be at high risk of severe CoVID-19 due to immune dysregulation and often compromised cardiopulmonary function. Aim of the

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Addressing Challenges with Falling or Staying Asleep

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

We frequently receive questions about sleep. Individuals with Down syndrome and/or their families report that they have difficulty falling asleep or staying asleep. In this article, we will share stra

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Sleep in Adolescents and Adults with Down Syndrome Webinar (8/4/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Webinar

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on August 4, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrom

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What is Occupational Therapy?

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

Occupational therapy is a health profession concerned with how people function and perform meaningful activities in their respective roles. "Occupation" is any activity in which one

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Down Syndrome: Review Article

Author: Marilyn Bull, MD - The New England Journal of Medicine (2020)

Abstract Down syndrome, also called Down’s syndrome (DS), is the most common chromosomal condition associated with intellectual disability and is characterized by a variety of additional cli

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Dermatologic Conditions in Down Syndrome: A Single-Center Retrospective Chart Review

Author: Rork et al. - Pediatric Dermatology (2020)

Abstract Background:  Current literature addressing dermatologic conditions associated with Down syndrome is limited, with emphasis on rare skin conditions and lack of consensus on the incide

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Hospital Visitor Policies During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource List

UPDATED JUNE 2020 : On June 9, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced that it had reached a resolution  on the first federal com

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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

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Helping an Individual with Down Syndrome Tolerate COVID-19 Testing

Author: Adult Down Syndrome Center - Resource List

*Please note: this article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was expos

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Behavior Changes in Adolescents and Adults with Down Syndrome Webinar Recording (4/28/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Webinar

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on April 28, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrom

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NTG - Early Detection and Screen for Dementia (NTG-EDSD)

Author: National Task Group on Intellectual Disabilities and Dementia Practices - Dementia Screening Tool

The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) developed a screening tool called the NTG - Early Detection Screen for Dementia (NTG-EDSD). The NTG-EDSD&

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Challenges of Pediatric Disease in Adulthood

Author: Baumgardner & Chicoine - Journal of Patient-Centered Research and Reviews (2020)

Abstract Some chronic diseases - such as the rare bone disease X-linked hypophosphatemia, the impetus for a study reported within Volume 7, Issue 2 of the  Journal of Patient-Centered Researc

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Non-Discrimination in Medical Treatment for COVID-19

Author: Adult Down Syndrome Center - Resource List

Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar

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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 wit

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Low Carb Diets

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

We received a question about low carb diets.  I am looking for information on helping my 28-year-old daughter with Down syndrome lose some weight. We both started a low carb diet a couple wee

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Refusal to Eat Solid Foods

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

We received a question about a person with Down syndrome who was refusing to eat solids. He was found to have dental disease. He needed several fillings and had a couple baby teeth removed. The dentis

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Self-Injurious Behavior

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

What is self-injurious behavior? Self-injurious behavior (SIB) is behavior that an individual does that results in harm to their own body. These behaviors may include hitting oneself, striking a body

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Living with Dementia: A Booklet About Dementia for Families and Carers of a Person with Down's Syndrome

Author: Down's Syndrome Scotland - Resource

This booklet about dementia for families and carers was developed by Down's Syndrome Scotland. It was designed to help in the care and support of a person with Down syndrome and dementia. &

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Down Syndrome and Dementia: Advances in the Field

Author: McGlinchey et al. - Current Opinion in Psychiatry (2020)

Abstract Purpose of Review:  People with Down syndrome represent the world's largest population with a genetic risk for Alzheimer's disease. This review will provide a short s

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Down Syndrome

Author: Antonarakis et al. - Nature Reviews: Disease Primers (2020)

Abstract Trisomy 21, the presence of a supernumerary chromosome 21, results in a collection of clinical features commonly known as Down syndrome (DS). DS is among the most genetically complex of the c

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Let's Talk about Death: A Booklet about Death and Funerals for People with Down's Syndrome

Author: Down's Syndrome Scotland

This booklet for individuals with Down syndrome explains death using easy-to-read language. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).

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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.  Me

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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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