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

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Evaluation of Upper Airway Stimulation for Adolescents with Down Syndrome and Obstructive Sleep Apnea

Author: Yu et al. (2022) - JAMA Otolaryngology-Head & Neck Surgery

Abstract Importance :  Patients with Down syndrome have a high incidence of persistent obstructive sleep apnea (OSA) and limited treatment options. Upper airway hypoglossal stimulation has be

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Ableism at the Bedside: People with Intellectual Disabilities and COVID-19

Author: Chicoine et al. - The Journal of the American Board of Family Medicine (2022)

Abstract People with intellectual and developmental disabilities have a higher risk of mortality from COVID-19 than the general population. Providers may assume that this is due to the burden of comor

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COVID-19 Vaccination of Individuals with Down Syndrome - Data from the Trisomy 21 Research Society Survey

Author: Huls et al. - Vaccines (2022)

Abstract Individuals with Down syndrome (DS) are among the groups with the highest risk for severe COVID-19. Better understanding of the efficacy and risks of COVID-19 vaccines for individuals with DS

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Immune Response to COVID-19 Vaccines

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

We have shared both our clinical experience and studies that demonstrate clinical effectiveness and safety of COVID-19 vaccines in people with Down syndrome. However, until recently, studies have not

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Advancements in the Treatment of Obstructive Sleep Apnea Webinar Recording (11/8/2021)

Author: Michael Layland, MD - Otolaryngologist

The video below is a recording of a webinar presented by Dr. Michael Layland on November 8, 2021. Dr. Layland is an otolaryngologist at the Ear Nose & Throat Center and Advocate Lutheran Gener

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Impact of the COVID-19 Pandemic on Daily Life, Mood, and Behavior of Adults with Down Syndrome

Author: Hartley et al. - Disability and Health Journal (2022)

Abstract Background:  The Down syndrome population has been disproportionately affected by Coronavirus 2019 (COVID-19) in terms of experiencing severe illness and death. Soc

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Create a Bedtime/Sleep Routine Visual

Author: Katie Frank, PhD, OTR/L

This document includes a template and images that individuals with Down syndrome and their families can use to create a bedtime routine visual.

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Testicular Cancer

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

Key Points Testicular cancer is more common in men with Down syndrome compared to men without Down syndrome. Health care providers can check for testicular cancer during an annual physical exam. Testi

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Safety and Long-Term Immunogenicity of BNT162b2 Vaccine in Individuals with Down Syndrome

Author: Valentini et al. - Journal of Clinical Medicine (2022)

Abstract We aimed to evaluate the safety and immunogenicity of the BNT162b2 vaccine in young people with Down syndrome (DS), and to compare their humoral immune response with those of the healthy cont

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Wearing Face Masks During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource List

UPDATED 1/14/2022 : The CDC has provided updated information on what types of masks to wear   . The Centers for Disease Control and Prevention (CDC) recommends wearing masks in public setting

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T21RS COVID-19 and Down Syndrome

Author: Trisomy 21 Research Society - COVID-19 Taskforce

The Trisomy 21 Research Society  (T21RS) has developed several taskforces in response to the COVID-19 pandemic. The taskforces are studying COVID-19 infection and vaccination in people with D

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DSMIG-USA IDD COVID-19 Vaccination Position Statement

Author: Down Syndrome Medical Interest Group - USA - DSMIG-USA

On December 16, 2020, the Down Syndrome Medical Interest Group - USA issued a position statement on the COVID-19 vaccine. The position statement has been updated several times, most recently on Novemb

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COVID-19 in Children with Down Syndrome: Data from the Trisomy 21 Research Society Survey

Author: Emes et al. - Journal of Clinical Medicine (2021)

Abstract Adults with Down syndrome (DS) are at higher risk for severe outcomes of coronavirus disease 2019 (COVID-19) then the general population, but evidence is required to understand the risks for

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Night Terrors in People with Down Syndrome

Author: Brian Chicoine, MD - "Ask Dr. Chicoine" LuMind IDSC Foundation

Night terrors (or sleep terrors) are described as a sudden arousal from sleep associated with sitting up in bed, intense fear, and a piercing scream. Symptoms include increased heart rate, increased r

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Visuals and Videos About the COVID-19 Vaccine

Author: Adult Down Syndrome Center - Resource List

Several organizations have created helpful resources about COVID-19 vaccines. We have provided links to some of them below.  VISUALS / PLAIN LANGUAGE RESOURCES Getting the COVID-19 Vaccine &a

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Possible Causes of Regression in People with Down Syndrome during the COVID-19 Pandemic

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

We received a question about a man with Down syndrome in his late 30s. His family shared that he developed catatonia, was hearing people speaking in his head, and lost a significant amount of weight.

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Helping Children and Adults with Down Syndrome to Cope with Grief Webinar Recording (7/28/2021)

Author: Rose Reif, MS, LCMHC, CRC, BC-TMH - Down Syndrome Association of Delaware

On July 28, 2021, the Down Syndrome Association of Delaware hosted a webinar called, "Helping Children and Adults with Down Syndrome to Cope with Grief." The presenter was Rose Reif,

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Sleep Disorders in Adults with Down Syndrome

Author: Gimenez, Altuna, Blessing, Osorio, & Fortea - Journal of Clinical Medicine (2021)

Abstract Sleep disorders, despite being very frequent in adults with Down syndrome (DS), are often overlooked due to a lack of awareness by families and physicians and the absence of specific clinical

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Mechanistic Analysis of Age-Related Clinical Manifestations in Down Syndrome

Author: Chen et al. - Frontiers in Aging Neuroscience (2021)

Abstract Down syndrome (DS) is the most common genetic cause of Alzheimer's disease (AD) due to trisomy for all or part of human chromosome 21 (Hsa21). It is also associated with other phenoty

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Mental Health Causes for Behavior Change During a Pandemic Webinar Recording (3/28/2021)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on March 28, 2021, as part of the Massachusetts Down Syndrome Congress 37th Annual Virtual Confe

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Use of Prolia to Treat Osteoporosis

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

We were asked a question about the use of Prolia to treat osteoporosis in individuals with Down syndrome. Osteoporosis is a condition in which a person's bones become brittle or weak. It can l

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The Devastating Impact of COVID-19 on Individuals with Intellectual Disabilities in the United States

Author: Gleason et al. - NEJM Catalyst, Commentary

Summary A cross-sectional study of 64,858,460 patients across 547 health care organizations reveals that having an intellectual disability was the strongest independent risk factor for presenting with

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Medical Vulnerability of Individuals with Down Syndrome to Severe COVID-19 - Data from the Trisomy 21 Research Society and the UK ISARIC4C Survey

Author: Huls et al. - EClinicalMedicine

Abstract Background:  Health conditions, immune dysfunction, and premature aging associated with trisomy 21 (Down syndrome, DS) may impact the clinical course of COVID-19.  Methods:&

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Visuals and Videos About Wearing Masks During COVID-19

Author: Adult Down Syndrome Center - Resource List

Several organizations have created helpful resources about wearing masks during COVID-19. We have provided links to some of them below.  VISUALS / STORIES / PLAIN LANGUAGE RESOURCES Wearing a

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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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