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

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COVID-19 & Down Syndrome Resource

Author: National Consortium - DSMIG-USA, Global, LuMind IDSC, NDSC, NDSS, NTG

Throughout the COVID-19 pandemic, a national consortium of organizations has shared a document with information on COVID-19 and Down syndrome. The organizations in the consortium are the Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (Global), LuMind I

Self-Talk in People with Down Syndrome Webinar Slides (11/10/2021)

Author: Brian Chicoine, MD

This document contains the slides from Dr. Brian Chicoine's presentation on self-talk in people with Down syndrome.

Self-Talk in People with Down Syndrome Webinar Recording (11/10/2021)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD on November 10, 2021. Dr. Chicoine is the co-founder and medical director at the Adult Down Syndrome Center. The topic of the webinar was self-talk. Self-talk is a conversation with oneself or imaginary friends. It can be a

COVID-19 Vaccine Information

Author: Adult Down Syndrome Center - Resource List

General Vaccine Information ​Individuals who are 5 years of age and older are eligible to receive COVID-19 vaccinations. The website of the Centers for Disease Control and Prevention (CDC) has recommendations based on a person's residence, occupation, medical conditions, and other fact

Celebrating Holidays During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource

Updated November 2021 : We originally shared this resource in 2020 before COVID-19 vaccinations were available. The CDC has updated the page on celebrating holidays during the COVID-19 pandemic to include information that accounts for the availability of vaccines.  We have received

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 children with DS, which is necessary to inform COVID-19 shielding advice and vaccination priorities.

COVID-19 Booster Shots and Third Doses

Author: Adult Down Syndrome Center - Resource

UPDATED 10/29/2021:  The physicians at the Adult Down Syndrome Center shared information about COVID-19 booster shots for individuals with Down syndrome in the article linked  here . 10/21/2021 : The CDC shared booster shot recommendations for the Moderna and Johnson & John

Information on COVID-19 Booster Shots from the Adult Down Syndrome Center

Author: Brian Chicoine, MD, Erin Dominiak, MD, and Hannah Graham, MD - Adult Down Syndrome Center

UPDATED 11/22/2021 The CDC expanded the list of people who  may  get a booster to include people age 18 years and older who received Pfizer-BioNTech or Moderna COVID-19 vaccines. UPDATED 10/29/2021 In October 2021, the Centers for Disease Control and Prevention (CDC) updated the re

Questions to Ask When Prescribed a New Medication

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

Are you a person with Down syndrome and you are being prescribed a new medication? Are you assisting a person with Down syndrome with their health care and the individual is being prescribed a new medication? What are some of the things that should be considered? Some general questions to ask before

Risk Prediction of COVID-19 Related Death and Hospital Admission in Adults after COVID-19 Vaccination

Author: Hippisley-Cox et al. - The BMJ (2021)

Abstract: Objectives:  To derive and validate risk prediction algorithms to estimate the risk of COVID-19 related mortality and hospital admission in UK adults after one or two doses of COVID-19 vaccination. Design:  Prospective, population based cohort study using the QResearch da

The Groove in People with Down Syndrome Webinar Slides (8/25/2021)

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

These are the slides from a webinar called "The Groove in People with Down Syndrome" presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L.

The Groove in People with Down Syndrome Webinar Recording (8/25/2021)

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 August 25, 2021. Dr. Chicoine is the medical director at the Adult Down Syndrome Center and Dr. Frank is the occupational therapist at the Center. In this presentation, they discuss the &qu

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  (Autism and Intellectual Disabilities in Pennsylvania) After Getting the COVID-19 Vaccine &a

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. The man had gotten a COVID-19 vaccine about one month before his symptoms started. His family wonder

Respite Organizations and Providers

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

This list below includes information about respite organizations and providers in the greater Chicagoland area and/or Illinois. The types of respite provided are also included and color-coded:   In-Home Respite Residential Respite Group Respite Voucher Respite An overview of respite care an

DSMIG Response to CDC Mask Recommendations

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

In May 2021, the Down Syndrome Medical Interest Group shared a position statement titled "Response to Centers for Disease Control Mask Recommendations." This document shares information that people with Down syndrome and their families may want to consider in ligh

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 was updated on January 5, 2021 and again on May 28, 2021.     DSMIG-USA recommends the COVID-19 vaccine for individuals with Dow

Immune Response to COVID-19 Vaccines

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

We received a question about whether the immune systems of people with Down syndrome produce antibodies in response to COVID-19 vaccines. I have shared the response I sent below.  The immune system's response to any vaccine is key to preventing infections. However, some people with

Post COVID-19 Life: What Does This Look Like and How Do We Prepare?

Author: Nicole Baumer, MD, MEd, Katie Frank, PhD, OTR/L, Lina Patel, PsyD - National Down Syndrome Society Presentation

What does post COVID-19 life look like and how do we prepare? These questions were discussed in a presentation hosted by the National Down Syndrome Society during their virtual Adult Summit in April 2021. The presenters were three members of the Down Syndrome Medical Interest Group - USA (DSMIG-USA)

Prevalence of Common Disease Conditions in a Large Cohort of Individuals with Down Syndrome in the United States

Author: Chicoine et al. - Journal of Patient-Centered Research and Reviews (2021)

Abstract Purpose:  Given the current life expectancy and number of individuals living with Down syndrome (DS), it is important to learn common occurrences of disease conditions across the developmental lifespan. This study analyzed data from a large cohort of individuals with DS in an effor

Travel after COVID-19 Vaccination

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

The information below was shared on April 12, 2021. For the most up-to-date information, please see the website of the Centers for Disease Control and Prevention (CDC) at this link .  My family and I have been vaccinated. Is it safe to travel?  We have started to get questions simi

Mental Wellness in Adults with Down Syndrome (2nd Edition)

Author: Dennis McGuire, PhD and Brian Chicoine, MD - Book (2021)

Publisher's Book Description Awards for the First Edition:  2007 Independent Publisher Award: Bronze Medalist in Psychology/Mental Health Category 2006 Best Book Awards, Psychology/Mental Health Finalist 2006 ForeWord Magazine's Book of the Year Award: Finalist in Psychology

Dysgerminomas in Women with Down Syndrome

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

We received a request for information on dysgerminomas in women with Down syndrome. Dysgerminomas are germ cell tumors that typically occur in the ovary. Testicular cancer is the comparable cancer in men with Down syndrome. Testicular cancer has been found to be more common in men with Down syndrome

ADSC Patient Questionnaires

Author: Adult Down Syndrome Center - Forms

New and returning patients to the Adult Down Syndrome Center are asked to fill out a health questionnaire to share important information with their health care provider and help guide their appointment. These questions may be helpful for individuals who are not patients at the Center to review prior

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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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