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GLOBAL Medical Care Guidelines for Adults with Down Syndrome

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EXCITING NEWS: GLOBAL ADULT GUIDELINE NOW AVAILABLE IN SPANISH, ITALIAN & JAPANESE!

The new GLOBAL Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Adult 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 Adult 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 Adult 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.

Family-Friendly GLOBAL Adult Guideline

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The Family-Friendly GLOBAL Adult Guideline provides the same important information covered in the Full GLOBAL Guideline in a family-friendly format with helpful pull-out quotes, definitions of medical terms, large photos and font, and is color coded by medical topic.

Request Printed Copies

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 Adult Guideline Resources

The GLOBAL Adult 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.
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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.
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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.
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Download:
A checklist to support families and self advocates monitor and track potential signs and symptoms of celiac disease as established in the GLOBAL Adult Guideline.
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Download:
A toolkit to support families and self advocates adhere to the behavior recommendations as established in the GLOBAL Adult Guideline and understand the parts of a psychosocial evaluation.

Second Edition GLOBAL Adult Guideline Workgroup

Authors

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)

Michael McDermott (MD)

Joan Medlen (MEd, RD, LD)

Micol Rothman (MD)

Stephanie Santoro (MD)

Mary Stephens (MD, MHP)

Elizabeth Yeung (MD)

CONTRIBUTORS TO FUTURE RESEARCH NEEDS:

Joaquín M. Espinosa (PhD)

Joann Fontanarosa (PhD)

Gina Giradi (MS)

Allison Gross (MLS)

Janice Kaczmarek (MS)

Lina R. Patel (PsyD)

Michael S. Rafii (MD, PhD)

Karen Schoelles (MD, SM, FACP)

Dr Kent McKelvey Jr
In Loving Memory…​
of Dr. Kent McKelvey Jr., who dedicated his life to caring for adults with Down syndrome. His leadership and belief in GLOBAL gave us the confidence to create this important guideline. We, and the Down syndrome community, are forever grateful.

GENEROUS COMMUNITY SUPPORTERS

KEY COLLABORATOR

The Ritter Family
Shawna Lucas

MULTI-YEAR SUPPORTERS
Adam’s Camp
Arc Thrift Stores
Bringing Up Down Syndrome (BUDS)
Broward Gold Coast Down Syndrome Organization
Designer Genes of North Dakota
Down Country
Down Syndrome Advocates in Action Nebraska
Down Syndrome Alliance of the Midlands
Down Syndrome Association of Atlanta
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 Greater New Orleans
Down Syndrome Association of Greater St. Louis
Down Syndrome Association of Greater Winston-Salem
Down Syndrome Association of Jacksonville
Down Syndrome Association of Memphis & the Mid-South
Down Syndrome Association of Middle Tennessee
Down Syndrome Association of Minnesota
Down Syndrome Association of Northeast Indiana
Down Syndrome Association of Northeast Ohio
Down Syndrome Association of Northern Virginia
Down Syndrome Association of South Georgia
Down Syndrome Association of Southern New Jersey
Down Syndrome Association of Wisconsin
Down Syndrome Coalition for El Paso

Down Syndrome Connections Las Vegas
Down Syndrome Connection of the Bay Area
Down Syndrome Family Connection
Down Syndrome Guild of Dallas
Down Syndrome Indiana
Down Syndrome Network of Montgomery County
Down Syndrome of Louisville

East Texas Down Syndrome Group
GraceSigns
IMDSA
Japan Down Syndrome Association

National Down Syndrome Congress
North Carolina Down Syndrome Alliance
Rio Grande Valley Down Syndrome Association
Rocky Mountain Down Syndrome Association
Sharing Down Syndrome Arizona

Southern Arizona Network for Down Syndrome
Virginia Down Syndrome Association
Dra. Macarena Lizama & Centro UC Síndrome de Down

BENEFACTORS

Burg Family Foundation

National Down Syndrome Society

Rocky Mountain Down Syndrome Association

KEY SUPPORTERS

Amy Van Bergen
Anna & John J. Sie Center for Down Syndrome

Charles Monfort
Down Syndrome Association of Central Florida
Down Syndrome Association of Central Ohio
Down Syndrome Association of Orange County
Down Syndrome of Louisville, Inc.
Linda Crnic Institute for Down Syndrome
The Napoleone Family

SUPPORTERS

ChapTer 21
Designer Genes of North Dakota
Down Syndrome Affiliates in Action
Down Syndrome Alabama
Down Syndrome Association for Families of Nebraska
Down Syndrome Association of Acadiana
Down Syndrome Association of Connecticut
Down Syndrome Association of Greater Cincinnati
Down Syndrome Association of Northern Virginia
Fun Coast Down Syndrome Association
The Family of Rya Gracyn Pierce

FRIENDS

Alan P. & Veronica C. Neuman Family
Charitable Fund
Alaska Down Syndrome Network
Chattanooga Down Syndrome Society
Club 21 Learning & Resource Center
David Egan & Family
Down Syndrome Association of Central Kentucky
Down Syndrome Association of Central Oklahoma
Down Syndrome Association of Delaware
Down Syndrome Association of Northeast Ohio
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
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
Wisconsin Upside Down

 

OTHER HELPFUL RESOURCES

Down Syndrome Medical Care Centers in the U.S.

GLOBAL Webinar Series: Important Medical Updates

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

American Academy of Developmental Medicine and Dentistry

 
Global dance party members

Authors

Peter Bulova​
George Capone​
Brian Chicoine​
Terry Harville​
Barry Martin​
Dennis McGuire​
Kent McKelvey​
Bryn Gelaro​
Moya Peterson​
Amy Tsou​
Carl Tyler​
Michael Wells​
Michelle Sie Whitten

Committee Members​

Dr. Jarrett Barnhill​
Dr. Donald Bodenner​
Dr. Paul Camarata​
Dr. Kamala Gullapalli Cotts​
Dr. Robert Eckel​
Dr. Anna Esbensen​
Dr. James E. Hunt​
Dr. Seth Keller​
Dr Judy Lu Kim​
Dr. Ira Lott​
Dr. Michael McDermott​
Joan Medlen​
Dr. Micol Rothman​
Dr. Stephanie Santoro​
Dr. Mary Stephens​
Dr. Elizabeth Yeung​

Contributors

Dr. Joaquin Espinosa​
Dr. Joann Fontanarosa​
Gina Giradi​
Allison Gross​
Janice Kaczmarek​
Dr. Lina Patel​
Dr. Michael Rafii​
Dr, Karen Schoelles​