GLOBAL Medical Care Guidelines for Adults with Down Syndrome | Global Down Syndrome Foundation

GLOBAL Medical Care Guidelines for Adults with Down Syndrome

Adult Guidelines Brochure Graphic

"Thank you for providing the GLOBAL Guideline as a roadmap that I can refer to when discussing ways to improve my quality of life with my medical providers."

- Kierra, Self-Advocate
FOR SELF-ADVOCATES & FAMILIES:
FOR CLINICIANS:

The new GLOBAL Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Guideline) provide first in-kind, evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome and was supported by generous donations from the Down syndrome community. To ensure this life-changing resource is kept up-to-date, please consider making a donation today!

As Published in JAMA

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The first in-kind GLOBAL Guideline 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. Exclusive access to the full article here!

“We are so pleased that the quality of our guideline rose to the occasion of being published in JAMA, and we are deeply grateful to our families and self-advocates for pushing us to work on this difficult project,” says Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation.

Full GLOBAL Guideline

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The GLOBAL Guideline provides an important tool in a primary care setting, augmenting both evaluation and care previously based solely on a person’s age, gender, clinical symptoms, or the presence of known risk factors and other comorbidities.

Copying, posting, or altering this document is prohibited. However, providing a link to the full guidelines on GLOBAL’s website is permissible. Free individual downloads and printing is also permissible.

Additional GLOBAL Guideline Resources

The GLOBAL Guideline is a technical resource for clinicians. The toolkits (for example, the checklist and diabetes toolkit) are family-friendly. GLOBAL will be creating additional toolkits, so please check back to get the most recent updates.

Copying, posting, or altering these documents is prohibited. However, providing a link to the toolkits on GLOBAL’s website is permissible. Free individual downloads and printing is also permissible.
Toolkit Graphic
Download:
This checklist is intended to support the health of adults with Down syndrome directly or through their caregivers. We encourage this checklist to be shared with your medical professionals.
Toolkit Graphic
Download:
A 2 part toolkit to support families and self advocates adhere to the diabetes recommendations as established in the GLOBAL Guideline and track their blood glucose levels over time.

Authors & Workgroup

Expert Volunteer Contributors

COMMITTEE MEMBERS:

Jarrett Barnhill (MD, DFAPA, FAACAP)

Donald Bodenner (MD, PhD)

Paul Camarata (MD)

Kamala Gullapalli Cotts (MD)

Rober H. Eckel (MD)

Anna Esbensen (PhD)

James E. Hunt (MD)

Seth Keller (MD)

 

Judy Lu Kim (MD)

Ira Lott (MD)

Joan Medlen (MEd, RD, LD)

Michael McDermott (MD)

Micol Rothman (MD)

Stephanie Santoro (MD)

Mary Stephens (MD, MHP)

Elizabeth Young (MD)

CONTRIBUTORS TO FUTURE RESEARCH NEEDS:

Joaquín M. Espinosa (PhD)

Lina R. Patel (PsyD)

Michael S. Rafii (MD, PhD)

GENEROUS COMMUNITY SUPPORTERS

KEY COLLABORATOR

The Ritter Family

BENEFACTOR

Down Syndrome Association of Greater Richmond
Down Syndrome Association of Minnesota
Down Syndrome Guild of Dallas

National Down Syndrome Society

Rocky Mountain Down Syndrome Association

KEY SUPPORTER

Anna & John J. Sie Center for Down Syndrome
Down Syndrome Association of Central Ohio
Down Syndrome Association of Jacksonville
Down Syndrome Association of Middle Tennessee
Down Syndrome Association of Orange County
Down Syndrome Connection of the Bay Area
Down Syndrome of Louisville, Inc.
Linda Crnic Institute for Down Syndrome
National Down Syndrome Congress

SUPPORTER

Broward Gold Coast Down Syndrome Organization
Chapter 21
Down Syndrome Affiliates in Action
Down Syndrome Alabama
Down Syndrome Alliance of the Midlands
Down Syndrome Association of Acadiana
Down Syndrome Association of Central Florida
Down Syndrome Association of Connecticut
Down Syndrome Association for Families of Nebraska
Down Syndrome Association of Greater Cincinnati
Down Syndrome Association of Greater St. Louis
Down Syndrome Association of Northern Virginia
Fun Coast Down Syndrome Association
The Family of Rya Gracyn Pierce

FRIEND

Alan P. & Veronica C. Neuman Family
Charitable Fund
Alaska Down Syndrome Network
Chattanooga Down Syndrome Society
Club 21 Learning & Resource Center
David Egan & Family
Designer Genes of North Dakota
Down Syndrome Association of Central California
Down Syndrome Association of Central Kentucky
Down Syndrome Association of Central Oklahoma
Down Syndrome Association of Central Texas
Down Syndrome Association of Delaware
Down Syndrome Association of the Brazos Valley
Down Syndrome Association of Wisconsin, Inc.
Down Syndrome Family Connection
Down Syndrome Foundation of Southeastern New Mexico
Eastern Idaho Down Syndrome Family Connect
East Texas Down Syndrome Group
Families Exploring Down Syndrome of Brevard
International Mosaic Down Syndrome Association
Kern Down Syndrome Network
Red River Valley Down Syndrome Society
Rio Grande Valley Down Syndrome Association
Sampson Collaborative Law
S.M.I.L.E. on Down Syndrome
Southern Arizona Network for Down Syndrome
The Up Side of Downs of Northeast Ohio
Wisconsin Upside Down

OTHER HELPFUL RESOURCES

Down Syndrome Medical Care Centers in the U.S.

GLOBAL Webinar Series: Medical Care Guidelines

Immune Skin Conditions Clinical Trial
The purpose of this research is to better understand and treat immune skin conditions in people with Down syndrome.

Linda Crnic Institute for Down Syndrome
Improving the lives of people with DS through advanced biomedical research with an ultimate goal to enable precision medicine approaches to improve health outcomes in Down syndrome, including the development of new diagnostic and therapeutic tools.

Down Syndrome Medical Interest Group-USA