MEDICAL PROFESSIONALS

The GLOBAL Guidelines provides an evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome.

Click here to download a copy of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome.


The American Academy of Pediatrics (AAP) has developed a special guide to help parents and families of children with Down syndrome. This document focuses on medical topics that affect physical health.

Click here to download the complete guide, “Health Care Information for Families of Children with Down Syndrome” (PDF).

Hypothyroid

Hyperthyroid

Diabetes Type 1

Diabetes Type 2

Genetic Testing

Mosaic Down syndrome

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PANS/PANDAS

  • Breast Cancer
  • Myelodysplastic Syndrome (MDS)
  • Prostate Cancer
  • Transient Myeloproliferative Disorder (TMD)

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DOWN SYNDROME MEDICAL CLINICS

Click here to see a map and listing of Down syndrome clinics in the United States.

Click here to see a map and listing of Down syndrome clinics in the United States.

WEBINARS,  VIDEOS & PODCASTS

  1. Dr. Brian Skotko, Director of the Massachusetts General Down Syndrome Program has developed this 3-video webinar series (with more to come!) to teach those who have loved ones with Down syndrome to learn how they might boost cognition and prevent Alzheimer’s disease in individuals with Down syndrome. This is a FREE webinar series!

Global Down Syndrome has archived many of their past webinars.  Click here for Global DS’s Webinar Area.

  • Full webinars are free to Global Down Syndrome members and cost a small fee per webinar for non-members.  However, for most archived webinars on their website, they do provide (for free): a synopsis, a video clip from the webinar, often the related Power Point presentation as well as a transcript of the Q&A from the associated webinar!

NDSS has a listing of the previous education-related webinars here.

Webinar topics include:

  • Accommodations and Modifications
  • Inclusion 101
  • Preparing for the IEP
  • The Down Syndrome Association of Wisconsin has an extensive webinar archive, which can be accessed here.  Additionally at the top of their Webinar page, they include links to registration for upcoming webinars!
  • Topics in their webinar archive include, but are not limited to: behavior, aging, feeding, health, financial issues, independent living, school, transition.

Click here for the the podcast series for the Down Syndrome Center of Western Pennsylvania at Children’s Hospital of Pittsburgh of UPMC.

BOOKS & PAMPHLETS

  • The Little King and His Marshmallow Kingdom – Louis Rotella III
  • We’ll Paint the Octopus Red – Stephanie Stuve-Bodeen

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  • Expecting Adam – Martha Beck
  • My Heart Can’t Even Believe It – Amy Silverman
  • Bloom – Kelly Hampton
  • Jewel – Brett Lott

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THERAPY PROFESSIONALS

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DEVELOPMENT & BEHAVIOR
Clinical Trials for DS
  • Safety, Tolerability and Immunogenicity of ACI-24 Vaccine in Adults with Down Syndrome
    • Interventional | Active, Not Recruiting
      • Age: 25-45 years |Location: St. Joseph’s Hospital and Medical Center-Barrow Neurology Clinics, Phoenix, AZ
      • Trial Description:
        The purpose of this study is to test in adults with Down Syndrome the safety, tolerability and immunogenicity of a vaccine, ACI-24.

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  • Study of Alzheimers Disease in Down syndrome
    • Observational | Recruiting
      • Age: 25+ | Location: Barrow Neurological Institute, Phoenix, AZ 85013 
        Contact: Sandy Quintanilla | 602-406-7054 | sandy.quintanilla@dignityhealth.org
        Principal Investigator: Anna Burke, M.D.
      • Trial Description: This is an observational, multi-center, longitudinal cohort study to characterize adults with DS ages 25 years and above enrolled at specialized care centers. The aim is to assess changes in cognition, behavior, function and health over approximately 24 months. Blood will be collected for the development of plasma AD biomarkers useful in the Down syndrome population.

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  • SPARK:  sponsored by the Simons Foundation Autism Research Initiative, has the mission of speeding up research and advancing understanding of autism by building the nation’s largest autism study.
    • You can register online and contribute a saliva sample using a collection kit from your home.
    • Individuals with autism will receive gift cards valued up to a total of $50 for participating.
    • Registration and information can be found online at www.SPARKforAutism.org/BCH.
  • B-Lymphoblastic Leukemia
    • Study to investigate Blinatumomab in combination with Chemotherapy in Patients with newly Diagnosed B-Lymphoblastic Leukemia
    • Interventional | Recruiting
      • Age: 365 days to 31 years
      • Locations:
        Cardon Children’s Medical Center, Mesa, AZ, Phoenix Children’s Hospital, Phoenix, AZ, Banner University Medical Center, Tucson, AZ
      • Trial Description:This phase III trial studies how well blinatumomab works in combination with chemotherapy in treating patients with newly diagnosed, standard risk B-lymphoblastic leukemia or B-lymphoblastic lymphoma with or without Down syndrome.

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  • Acute Myeloid Leukemia
    • Response-Based Chemotherapy in Treating Newly Diagnosed Acute Myeloid Leukemia or Myelodysplastic Syndrome in Younger Patients with Down Syndrome
    • Interventional | Recruiting
      • Age: 91 days to 3 years
      • Locations: Cardon Children’s Medical Center, Mesa, AZ, Phoenix Children’s Hospital, Phoenix, AZ
      • Trial Description:This phase III trial studies response-based chemotherapy in treating newly diagnosed acute myeloid leukemia or myelodysplastic syndrome in younger patients with Down syndrome.

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  • Risk-Adapted Chemotherapy
    • Risk-Adapted Chemotherapy in Treating younger patients with newly diagnosed Standard-Risk Acute Lymphoblastic Leukemia or Localized B-Lineage Lymphoblastic Lymphoma
    • Interventional | Active, Not Recruiting
      • Age: 1-30 years
      • Locations: Cardon Children’s Medical Center, Mesa, AZ, Phoenix Children’s Hospital, Phoenix, AZ, Banner University Medical Center, Tucson, AZ
      • Trial Description: This partially randomized phase III trial studies the side effects of different combinations of risk-adapted chemotherapy regimens and how well they work in treating younger patients with newly diagnosed standard-risk acute lymphoblastic leukemia or B-lineage lymphoblastic lymphoma that is found only in the tissue or organ where it began (localized).

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  • Medications for Obstructive Sleep Apnea in Children with Down Syndrome
    • Interventional | Not yet recruiting
      • Age: 6-17 years | Location: University of Arizona | Tucson, AZ
      • Interventions: Drug – Atomoxetine and oxybutynin (ato-oxy)
      • Study DescriptionThis is a randomized, double blind, cross-over study of the combination of atomoxetine and oxybutynin (ato-oxy) in children with DS and OSA documented by polysomnography (PSG).
  • Study of Blood Samples from Newborns with Down Syndrome
    • Observational | Active, Not Recruiting
      • Age: Up to 90 days
      • Location: Phoenix Children’s Hospital, Phoenix, AZ
      • Trial Description:  This research study is looking at blood samples from newborns with Down syndrome. Studying the genes expressed in samples of blood from patients with Down syndrome may help doctors identify biomarkers related to cancer.

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