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全球唐氏综合征成人医疗指南

Adult Guidelines Brochure Graphic

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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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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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
亚当营地
Arc Thrift Stores
抚养唐氏综合症(BUDS)
布劳沃德黄金海岸唐氏综合症组织
北达科他州的基因设计师
下乡
内布拉斯加州唐氏综合症倡导者行动组织
中部地区唐氏综合症联盟
亚特兰大唐氏综合症协会
Down Syndrome Association of Central California
肯塔基州中部唐氏综合症协会
俄克拉荷马州中部唐氏综合症协会
德克萨斯州中部唐氏综合症协会
大新奥尔良唐氏综合症协会
大圣路易斯唐氏综合症协会
大温斯顿-塞勒姆地区唐氏综合症协会
杰克逊维尔唐氏综合症协会
Down Syndrome Association of Memphis & the Mid-South
中田纳西唐氏综合症协会
明尼苏达州唐氏综合症协会
印第安纳州东北部唐氏综合症协会
俄亥俄州东北部唐氏综合症协会
北弗吉尼亚唐氏综合症协会
南佐治亚唐氏综合症协会
新泽西州南部唐氏综合症协会
威斯康星州唐氏综合症协会
Down Syndrome Coalition for El Paso

拉斯维加斯唐氏综合症联系中心
湾区唐氏综合症联系组织
唐氏综合症家庭联系
达拉斯唐氏综合症协会
印第安纳州唐氏综合症
蒙哥马利县唐氏综合症网络
路易斯维尔唐氏综合症

东德克萨斯唐氏综合症小组
GraceSigns
IMDSA
Japan Down Syndrome Association

全国唐氏综合症大会
北卡罗来纳州唐氏综合症联盟
里奥格兰德河谷唐氏综合症协会
落基山唐氏综合症协会
分享亚利桑那州唐氏综合症

南亚利桑那州唐氏综合症网络
弗吉尼亚唐氏综合症协会
Dra. Macarena Lizama & Centro UC Síndrome de Down

BENEFACTORS

Burg Family Foundation

全国唐氏综合症协会

落基山唐氏综合症协会

KEY SUPPORTERS

艾米-范伯根
Anna & John J. Sie Center for Down Syndrome

Charles Monfort
佛罗里达州中部唐氏综合症协会
Down Syndrome Association of Central Ohio
Down Syndrome Association of Orange County
Down Syndrome of Louisville, Inc.
琳达-克尼克唐氏综合症研究所
The Napoleone Family

SUPPORTERS

ChapTer 21
北达科他州的基因设计师
唐氏综合症联盟在行动
阿拉巴马州唐氏综合症
内布拉斯加州唐氏综合症家庭协会
Down Syndrome Association of Acadiana
康涅狄格州唐氏综合症协会
大辛辛那提唐氏综合症协会
北弗吉尼亚唐氏综合症协会
欢乐海岸唐氏综合症协会
The Family of Rya Gracyn Pierce

FRIENDS

Alan P. & Veronica C. Neuman Family
Charitable Fund
阿拉斯加唐氏综合症网络
Chattanooga Down Syndrome Society
俱乐部 21 学习与资源中心
戴维-伊根及家人
肯塔基州中部唐氏综合症协会
俄克拉荷马州中部唐氏综合症协会
特拉华州唐氏综合症协会
俄亥俄州东北部唐氏综合症协会
Down Syndrome Association of the Brazos Valley
Down Syndrome Association of Wisconsin, Inc.
唐氏综合症家庭联系
Down Syndrome Foundation of Southeastern New Mexico
东爱达荷州唐氏综合症家庭联系组织
Families Exploring Down Syndrome of Brevard
国际马赛克唐氏综合症协会
克恩唐氏综合症网络
Red River Valley Down Syndrome Society
里奥格兰德河谷唐氏综合症协会
Sampson Collaborative Law
关于唐氏综合症的 S.M.I.L.E.
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.

琳达-克尼克唐氏综合症研究所
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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