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For Medical Professionals

We Must Reduce the Trauma of Medical Diagnoses

Article from Scientific American that discusses if a diagnosis is not delivered with care, it can form an intense “flashbulb memory”  that endures for years after the fact. The study showed that the intensity of these memories and the emotions associated with them depend on the doctor’s delivery, which either softens the impact or prolongs the pain. 

Adult Medical Care Guidelines

The first-in-kind Global Guideline for medical care of adults with Down syndrome was peer reviewed, edited, and published in the Special Communication section of the print and online October 2020 issue of JAMA, the Journal of the American Medical Association.

Pediatric Medical Care Guidelines

Most recent American Academy of Pediatrics medical guidelines for Children with Down syndrome.

TN Department of Health information on Down Syndrome

Tennessee Department of Health website with current information about Down syndrome for both medical providers and families. Information, reources, and Links are available along with advocacy groups across the state of Tennessee.

About Health Care Guidelines

Original Interview With William I. Cohen, M.D. on the Significance of Down Syndrome Health Care Guidelines.

An Open Letter To OB/GYNs

An Open Letter To Every OB/GYN On The Planet: How To Deliver A Down Syndrome Diagnosis, The Right Way.

CDC Growth Charts for Children with Down Syndrome

New growth charts (2015) for children with Down syndrome in the United States are available for download. These charts can help healthcare providers monitor growth among children with Down syndrome and assess how well a child with Down syndrome is growing when compared to peers with Down syndrome.

Down Syndrome Clinic at Vanderbilt Children's Hospital

The clinic provides comprehensive care and professional services to children and teens with Down syndrome. The clinic staff assists patients in finding therapeutic services and educational/behavioral support and providing a multidisciplinary approach to treatment.

Down Syndrome Diagnosis Network

Down Syndrome Diagnosis Network has a goal to ensure families who receive a Down syndrome diagnosis receive current information and support.

Funding Assistance for Adaptive Equipment

Sometimes it can seem impossible to find funding for a piece of adaptive equipment you know will vastly enrich and enhance your child or client’s life. Includes Online funding resource guides and a list of funds and foundations set up to help with funding for disabilities.

Interdisciplinary Human Development Institute University of Kentucky (Brighter Tomorrows)

The Lettercase National Center for Prenatal and Postnatal Resources is part of the University of Kentucky’s Human Development Institute has free online learning modules for medical professionals on on screening, diagnostic tests and evidence-based practices when delivering a diagnosis of Down syndrome.

IDD Toolkit Telehealth Project

IDD Toolkit Telehealth Project is offered for Tennessee physicians, advanced practice nurses, and physician assistants. These tools, except for Autism table, were developed by the Developmental Disabilities Primary Care Initiative (DDPCI) (2005-2014).

Key Advice from Behavioral Expert

Dennis McGuire, Ph.D., two-time recipient of Global’s Award of Excellence—in Medical Outreach and Psychology, shares three important takeaways regarding behavioral health in people with Down syndrome:

Lettercase

Joseph P. Kennedy, Jr. Foundation’s Understanding a Down Syndrome Diagnosis is an accurate, balanced, and up-to-date booklet for use when delivering a diagnosis of Down Syndrome.

Myths and Truths about Down Syndrome

National Down Syndrome Society Changing Lives: Down Syndrome & the Health Care Professional Myths & Truths About Down Syndrome

National Center For Prenatal and Postnatal Resources

The National Center provides this clearinghouse of professionally recommended resources so that medical practitioners, expectant parents, and new parents have access to accurate, up-to-date, and balanced information about Down syndrome. 

NDSS Presenting a Diagnosis of Down Syndrome

National Down Syndrome Society Changing Lives: Down Syndrome & the Health Care Professional Presenting a Diagnosis of Down Syndrome gives suggestions for medical profssionals when giving a diagnosis, both pre-natally and post-natally.

NDSS Resources for Healthcare Professionals

A list of resources for Health Care Professionals on a variety of topics related to Down syndrome.

People First Language

To ensure inclusion, freedom, and respect for all, it's time to embrace People First Language.

The Perfect Child

Article written by Dr. Frank H. Boehm is professor and vice chair of the Department of Obstetrics and Gynecology at Vanderbilt University Medical Center for the America College of Obstretricians and Gynecologists about his grandson, Seth, who happens to have Down syndrome and is the "perfect child". Update a few years later can be found here

Physical Characteristics

While the only way to accurately diagnose Down syndrome is through a chromosomal karyotype, certain physical features may be present.