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

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Activities You Can Do at Home

Author: Adult Down Syndrome Center - Resource List

Are you looking for suggestions of activities you can do at home? Many organizations - including the Adult Down Syndrome Center - have compiled lists of ideas. Please see the links below!  Adult Down Syndrome Center 21 Healthy Ways to Celebrate WDSD (they apply all year long!) -  l

Affordable Sensory Equipment

Author: Katie Frank, PhD, OTR/L

In this handout, our occupational therapist provides recommendations for affordable sensory equipment .

An International Survey on the Impact of COVID-19 in Individuals with Down Syndrome

Author: Huls et al. - EClinicalMedicine (2020)

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:  The T21RS COVID-19 Initiative launched an international survey for clinicians or caregivers 

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 mammography screening strategies used for women without Down syndrome would benefit women with Down

Breast Cancer and Breast Cancer Screening for Women with Down Syndrome

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

Recommendations for breast cancer screening have varied over time and continue to vary. Organizations have different recommendations for when women should start being screened for breast cancer and how often they should be screened. Breast cancer is most commonly screened for with a mammogram, or an

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 and results of 993 mammograms were reviewed, including 902 screening and 93 diagnostic mammograms. O

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 population. Methods : We performed a literature review of cancer screening opportunities for adults with DS t

Celebrating Holidays During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource

We have received several questions about how to celebrate holidays safely during the COVID-19 pandemic. Like many of our answers, there isn't a one-size-fits-all solution. Many factors need to be considered when deciding how and with whom to celebrate. While the holidays will certainly look

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 present study is to assess epidemiological and clinical characteristics of individuals with DS dece

Colon Cancer Screening for People with Down Syndrome

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

Is colon cancer screening recommended for people with Down syndrome? Please note that this handout discusses screening colonoscopies (i.e. colonoscopies performed to identify pre-symptomatic or unrecognized symptomatic colon cancer). If there is an abnormality or symptom, we refer patients for colon

Coronavirus: What Is It and What Can I Do?

Author: The Arc Maryland and Maryland Developmental Disabilities Council

This document describes coronavirus (COVID-19) and steps we can take to keep ourselves and others safe.

COVID and Down Syndrome Webinar

Author: Dr. Brian Chicoine and Dr. Andre Strydom - Matthew Foundation Webinar

On January 8, 2021, Drs. Brian Chicoine and Andre Strydom presented a webinar hosted by the Matthew Foundation in collaboration with the Stanford Down Syndrome Research Center. They provided an update on the Trisomy 21 Research Society COVID and Down Syndrome Survey and discussed the DSMIG-USA Vacci

COVID-19 & Down Syndrome Resource

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

On March 1, 2021, a new resource on COVID-19 and Down syndrome was completed by a national consortium of organizations: the Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (Global), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), Na

COVID-19 Booster Shots and Third Doses

Author: Adult Down Syndrome Center - Resource

UPDATED 10/21/2021 : The CDC shared booster shot recommendations for the Moderna and Johnson & Johnson COVID-19 vaccines. The statement can be found at this link . 10/15/2021 : According to the CDC , you can get a flu vaccine at the same time you get a COVID-19 vaccine, including a COVID-19

COVID-19 Information By and For People with Disabilities [English]

Author: Green Mountain Self-Advocates

This handout uses plain language to describe COVID-19, how it spreads, how to avoid getting it, and what to do if we get it.

COVID-19 Mortality Risk in Down Syndrome: Results from a Cohort Study of 8 Million Adults

Author: Clift et al. - Annals of Internal Medicine (2020)

The article linked below describes the findings of a study that evaluated Down syndrome as a risk factor for death from COVID-19 through an analysis of individual-level data in a cohort study of 8.26 million adults. It was published at on October 21, 2020. Full-text (no cost):  h

COVID-19 Resources

Author: Adult Down Syndrome Center - Resource List

Many organizations are compiling COVID-19 resource lists. We have included links to some of them below.  The amount of information about COVID-19 can be overwhelming and can cause anxiety and stress. Our mental health is just as important as our physical health during this time. We recommen

COVID-19 Testing Sites

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 exposed to COVID-19 previously and developed some level of immunity to COVID-19 .  We have recei

COVID-19 Vaccine Information

Author: Adult Down Syndrome Center - Resource List

General Vaccine Information Centers for Disease Control and Prevention (CDC) Pfizer-BioNTech COVID-19 Vaccine   Moderna COVID-19 Vaccine Janssen (Johnson & Johnson) COVID-19 Vaccine National Association of Councils on Developmental Disabilities (NACDD) Get Out the Vaccine  

Dental Care During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource

The information below was shared on August 25, 2020. For the most up-to-date information, please see the website of the Centers for Disease Control and Prevention (CDC) at this link   and/or the Mouth Healthy website of the American Dental Association at this link . Dental disease, especial

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

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

Going to Public Places During the COVID-19 Pandemic

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

Many states and communities have lifted stay-at-home restrictions. We have received questions about whether it is safe to resume certain activities such as going to restaurants, getting haircuts, traveling, and more. Unfortunately, there is no "one-size-fits-all" answer. It depends

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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.