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

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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 D

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Respite Organizations and Providers

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

The 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:

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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 dev

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

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

The PDF linked below is a copy of the second edition of Dr. McGuire and Dr. Chicoine's book originally published by Woodbine House Publishing in 2021. After Woodbine closed in 2022, the publis

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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

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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 appointmen

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Specialty Clinics for Adults with Down Syndrome: A Clinic Survey

Author: Santoro et al. - American Journal of Medical Genetics: Part A (2021)

Abstract Specialty centers improve care for patients with Down syndrome. The cohort of adults with Down syndrome is increasing, but the capacity for specialty centers to meet their medical care needs

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Addressing Common Health Conditions in Adults with Down Syndrome Webinar Recording (2/10/2021)

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 February 10, 2021. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrome Center. In this present

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Tips for Running Virtual Social Groups

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

Since April, staff at the Adult Down Syndrome Center have been hosting online socials and social skills groups via Zoom. Our goal is to encourage social participation and engagement while we maintain

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Prostate Cancer Screening in Men with Down Syndrome

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

Should men with Down syndrome (DS) undergo prostate specific antigen (PSA) blood testing for prostate cancer screening? The United States Preventive Services Task Force (USPSTF) recommends the followi

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NDSC Parent Webinars

Author: National Down Syndrome Congress - Webinars

The National Down Syndrome Congress (NDSC) website contains recordings of webinars they have hosted for parents and caregivers. A variety of topics have been covered including puberty and relationship

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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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Information Forms to Share with Hospitals and Clinics

Author: Adult Down Syndrome Center - Resources

Visiting a hospital or clinic can be a stressful or frightening experience for some individuals with Down syndrome. The stress and fear can be increased if the healthcare providers are unfami

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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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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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Overview and Types of Respite

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

Respite care is short-term relief for primary caregivers. It can be used for as short as a few hours to as long as several weeks. Respite care can be provided in a variety of settings including the in

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Down Syndrome Medical Care Centers

Author: Global Down Syndrome Foundation - Resource

The Global Down Syndrome Foundation has compiled a list of medical care centers that specialize in treating patients with Down syndrome in the United States. It is organized by state. The list can be

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Cancer Screening in Adults with Down Syndrome: A Proposal

Author: Rethore et al. - 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

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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

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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 m

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Tips for Going Up and Down Stairs Safely

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

Going up and down stairs can be challenging for some people with Down syndrome. Aging, differences in depth perception, unsteady gait, and other issues may contribute to difficulty with navigating sta

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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

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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

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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.

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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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