Imazhi i fshehur i gjurmuesit të Facebook Pixel GLOBAL Medical Care Guidelines for Adults with Down Syndrome | Global Down Syndrome Foundation

Udhëzimet GLOBAL të kujdesit mjekësor për të rriturit me sindromën Down

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EXCITING NEWS: GLOBAL ADULT GUIDELINE NOW AVAILABLE IN SPANISH, ITALIAN, ALBANIAN, SWAHILI & 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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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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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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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
Kampi i Adamit
Arc Thrift Stores
Sindroma e Sjelljes Down (BUDS)
Organizata e Sindromës Broward Gold Coast Down
Genes Designer of North Dakota
Poshtë Vendi
Mbrojtësit e Sindromës Down në Veprim Nebraska
Aleanca e Sindromës Down të Midlands
Shoqata e Sindromës Down të Atlantës
Down Syndrome Association of Central California
Shoqata e Sindromës Down të Kentakit Qendror
Shoqata e Sindromës Down të Oklahomas Qendrore
Shoqata e Sindromës Down të Teksasit Qendror
Shoqata e Sindromës Down të New Orleans-it të Madh
Shoqata Down Syndrome of Greater St. Louis
Shoqata e Sindromës Down të Winston-Salem të Madh
Shoqata e Sindromës Down të Jacksonville
Down Syndrome Association of Memphis & the Mid-South
Shoqata e Sindromës Down të Tenesit të Mesëm
Shoqata e Sindromës Down të Minesotës
Shoqata e Sindromës Down të Indianës Verilindore
Shoqata e Sindromës Down të Ohajos Verilindore
Shoqata e Sindromës Down të Virxhinias Veriore
Shoqata e Sindromës Down të Gjeorgjisë Jugore
Shoqata e Sindromës Down të Nju Xhersit Jugor
Shoqata e Sindromës Down të Wisconsin
Down Syndrome Coalition for El Paso

Lidhjet me Sindromën Down në Las Vegas
Lidhja e Sindromës Down të Zonës së Gjirit
Lidhja familjare me sindromën Down
Shoqata e Sindromës Down të Dallasit
Sindroma Down Indiana
Rrjeti i Sindromës Down në Montgomery County
Sindroma Down e Louisville

Grupi i Sindromës Down të Teksasit Lindor
GraceSigns
IMDSA
Japan Down Syndrome Association

Kongresi Kombëtar i Sindromës Down
Aleanca e Sindromës Down të Karolinës së Veriut
Shoqata e Sindromës së Rio Grande Valley Down
Shoqata e Sindromës Rocky Mountain Down
Ndarja e Sindromës Down Arizona

Rrjeti i Arizonës Jugore për Sindromën Down
Shoqata e Sindromës Down të Virxhinias
Dra. Macarena Lizama & Centro UC Síndrome de Down

BENEFACTORS

Burg Family Foundation

Shoqëria Kombëtare e Sindromës Down

Shoqata e Sindromës Rocky Mountain Down

KEY SUPPORTERS

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

Charles Monfort
Shoqata e Sindromës Down të Floridës Qendrore
Down Syndrome Association of Central Ohio
Down Syndrome Association of Orange County
Down Syndrome of Louisville, Inc.
Instituti Linda Crnic për Sindromën Down
The Napoleone Family

SUPPORTERS

ChapTer 21
Genes Designer of North Dakota
Bashkëpunëtorët e Sindromës Down në veprim
Sindroma Down Alabama
Shoqata e Sindromës Down për Familjet e Nebraskës
Down Syndrome Association of Acadiana
Shoqata e Sindromës Down të Konektikatit
Shoqata e Sindromës Down të Cincinnatit të Madh
Shoqata e Sindromës Down të Virxhinias Veriore
Shoqata Fun Coast Down Syndrome
The Family of Rya Gracyn Pierce

FRIENDS

Alan P. & Veronica C. Neuman Family
Charitable Fund
Rrjeti i Sindromës Down të Alaskës
Chattanooga Down Syndrome Society
Qendra e Mësimit dhe Burimeve Club 21
David Egan dhe Familja
Shoqata e Sindromës Down të Kentakit Qendror
Shoqata e Sindromës Down të Oklahomas Qendrore
Shoqata e Sindromës Down të Delaware
Shoqata e Sindromës Down të Ohajos Verilindore
Down Syndrome Association of the Brazos Valley
Down Syndrome Association of Wisconsin, Inc.
Lidhja familjare me sindromën Down
Down Syndrome Foundation of Southeastern New Mexico
Lindore Idaho Down Sindromi Family Connect
Families Exploring Down Syndrome of Brevard
Shoqata Ndërkombëtare e Sindromës së Mozaikut Down
Rrjeti i Sindromës Kern Down
Red River Valley Down Syndrome Society
Shoqata e Sindromës së Rio Grande Valley Down
Sampson Collaborative Law
SMILE me Sindromën Down
Wisconsin Upside Down

 

OTHER HELPFUL RESOURCES

Qendrat e Kujdesit Mjekësor të Sindromës Down në SHBA

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.

Instituti Linda Crnic për Sindromën Down
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​

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