Udhëzimet GLOBAL të kujdesit mjekësor për të rriturit me sindromën Down
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

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




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




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.
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.




Second Edition GLOBAL Adult Guideline Workgroup
Authors

Peter Bulova përfundoi trajnimin e tij universitar në Universitetin Brown. Ai përfundoi rezidencën dhe rezidencën kryesore dhe fitoi diplomën e tij mjekësore në Universitetin e Pittsburgh. Ai është profesor i Mjekësisë së Përgjithshme të Brendshme dhe u mëson studentëve, rezidentëve dhe kolegëve të mjekësisë në Universitetin e Pitsburgut. Dr. Bulova është aktualisht i përfshirë në kërkime mbi sëmundjen e Alzheimerit tek të rriturit me sindromën Down, është pjesë e Komitetit të Rishikimit të të Dhënave të Qasjes në Regjistrin Kombëtar të Sindromës Down të NIH dhe është një recensues ad hoc për disa revista, duke përfshirë Journal of Intellectual Disability Research dhe American Revista mbi paaftësitë intelektuale dhe zhvillimore. Dr. Bulova shërben gjithashtu në Bordin Ekzekutiv të Grupit të Interesit Mjekësor të Sindromës Down dhe flet në nivel kombëtar për kujdesin ndaj të rriturve me sindromën Down.

Që nga viti 1990, Dr. Capone ka qenë në Institutin Kennedy Krieger ku aktualisht shërben si Drejtor i Klinikës dhe Qendrës Kërkimore të Sindromës Down. Ai është i interesuar për një gamë të gjerë temash që lidhen me njerëzit me sindromën Down, duke përfshirë kujdesin shëndetësor, zhvillimin-neurosjelljen, shëndetin mendor dhe provat e mjekimit të gjumit tek fëmijët dhe të rriturit. Dr. Capone jeton në Towson, Maryland me gruan e tij, Mary dhe djalin, Daniel.

Brian Chicoine, M.D. is the co-founder and Medical Director of the Advocate Medical Group Adult Down Syndrome Center in Park Ridge, Illinois. The Center has served over 6000 adolescents and adults with Down syndrome since its inception in 1992. Dr. Chicoine graduated from Loyola University of Chicago Stritch School of Medicine. He completed his Family Medicine residency at Lutheran General Hospital where he is now a faculty member. He has published many articles regarding health of people with Down syndrome. He has co-authored two books “Mental Wellness of Adults with Down Syndrome,” and “The Guide to Good Health for Teens and Adults with Down Syndrome” published by Woodbine House Publishing.

Terry Harville earned a PhD in Biochemistry and Molecular Biology, before earning his MD at the University of Florida. He completed a residency in Pediatrics and Fellowship in Pediatric Immunology, Rheumatology, and Transplantation Biology; also at the University of Florida. Dr. Harville joined the faculty of Duke University, where he pioneered hematopoietic transplantation in patients with rare forms of Combined Immunodeficiencies. Subsequently, he joined the faculty of Arkansas Children’s Hospital and the University of Arkansas for Medical Sciences, as Director of Pediatric Rheumatology and Immunodeficiencies. He was asked to take over the Directorship of the Transplantation Laboratories in order to provide better transplantation services in the state of Arkansas. Dr. Harville has more than 160 published abstracts, book chapters, and peer-reviewed manuscripts. Autism Spectrum of Disorders and other diseases of Neuro-atypicality, including Down syndrome, have been amongst his research and clinical care emphases. He also is considered an expert in the diagnosis of immunodeficiency disorders and autoimmune disorders, including celiac disease.

Barry Martin është një Asistent Profesor i Mjekësisë së Brendshme të Përgjithshme në Shkollën e Mjekësisë të Universitetit të Kolorados, ku ai viziton pacientët për kujdesin parësor dhe për konsultime. Ai është i certifikuar nga Bordi në Mjekësi Familjare dhe ka më shumë se 20 vjet përvojë në ofrimin e kujdesit parësor shëndetësor për të rriturit me aftësi të kufizuara, veçanërisht paaftësitë zhvillimore dhe sindromën Down. Ai shërbeu si Drejtor Mjekësor i ish-Klinikës së Sindromës Down të të rriturve në Denver. Aktualisht, ai është drejtor mjekësor i klinikës pilot të Sindromës Down për të rriturit në Denver dhe GLOBAL. Dr. Martin është anëtar i Kongresit Kombëtar të Sindromës Down dhe Grupit të Interesit Mjekësor të Sindromës Down.

Dr. McGuire është një ekspert i shëndetit të sjelljes së sindromës Down me më shumë se 30 vjet përvojë në fushën e shëndetit mendor dhe aftësive të kufizuara zhvillimore. Ai është ish-drejtor i Shërbimeve Psikosociale për Qendrën e Sindromës Down të të rriturve në Çikago, Illinois. Ai ndihmoi në krijimin e qendrës, e cila u shërben mbi 4000 pacientëve unikë çdo vit. Dr. McGuire kryeson ngjarjet në mbarë botën dhe është bashkëautor i dy librave të shquar: Shëndeti mendor i të rriturve me sindromën Down dhe Udhëzuesi për shëndet të mirë për adoleshentët dhe të rriturit me sindromën Down (2011), të dy nga Woodbine House. Ai mori shumë çmime duke përfshirë Çmimin Kërkimor të Kongresit Kombëtar të Sindromës Down Theodore D. Tjossem në 2003 dhe Çmimin Shkencor të Ditës Botërore të Sindromës Down në 2010. McGuire vazhdon të shohë çifte, familje dhe individë në një praktikë private në zonën e Çikagos. Dr. McGuire mori doktoraturën e tij në Universitetin e Illinois në Çikago dhe diplomën e tij master në Universitetin e Çikagos.

Dr. McKelvey leads a multidisciplinary clinic that provides comprehensive services for adolescents and adults with Down syndrome. He is interested in public health issues that take into account the growing number of people with genetic syndromes and the complex interplay of medical and social needs in this population across lifespan. Dr. McKelvey has published original research investigating the etiology of osteoporosis in individuals with Down syndrome and has worked as Principal Investigator on clinical trials involving cognitive aspects of Down syndrome. He is actively researching nutrition, autoimmunity and the role of inflammation as it relates to dementia. He is interested in biomarkers and genetic changes which predict the early onset of common diseases in Down syndrome and also have implications for treatment of disease in the general population.
*In loving memory of Dr. Kent McKelvey, 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 are forever grateful.

Moya Peterson është një profesor klinik në Qendrën Mjekësore të Universitetit të Kansasit, Shkollat e Infermierisë dhe Mjekësisë në Departamentin e Mjekësisë Familjare dhe Komunitare. Ajo themeloi dhe stafon klinikën e specializuar të të rriturve me sindromën Down. Ajo gjithashtu jep mësim në programin e diplomuar në shkollën e Infermierisë dhe në shumë nga qendrat e saj të mësimdhënies rreth njerëzve me aftësi të kufizuara dhe veçanërisht të rriturve me sindromën Down. Dr. Peterson përfundoi doktoraturën e saj në vitin 2006 me disertacionin e saj mbi të rriturit me sindromën Down dhe shqetësimet e familjeve të tyre rreth çështjeve shëndetësore në moshën madhore. Ishte shkëndija që filloi klinikën kur ajo zbuloi se nuk kishte ofrues specifikë të kujdesit shëndetësor për të rriturit me sindromën Down në Midwest.


Carl V. Tyler Jr. is a clinician-researcher and professor at the Cleveland Clinic. His life work has been devoted to improving the health and health care of persons with developmental disabilities through clinical care, research, and professional and community education. His clinical training in psychiatry, family medicine, and geriatric medicine provided a rich clinical foundation and framework to understand the difficulties and complexities in providing health care to this population. Following medical school and residency training, Dr. Tyler completed two academic fellowships at Case Western Reserve University; the first focused on aging and disability while the second was a 3-year NIH-sponsored fellowship in practice-based research design and methodology. Dr. Tyler is also the Director of the Developmental Disabilities-Practice-Based Research Network.

Michelle Sie Whitten is the Co-Founder, President & CEO of the Global Down Syndrome Foundation. GLOBAL is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. As a direct result of Michelle & GLOBAL’s impactful government advocacy, NIH budget for Down syndrome has gone from one of the least funded to quadrupling in the last four years. In addition, Michelle served as a co-author and architect of the 2020 GLOBAL Guideline as published in JAMA. She has been recognized for her dedication to improving the lives of people with Down syndrome over the past decade, including: 17 ICON Awards, Denver Business Journal's Most Admired CEO, 2 National Down Syndrome Congress President’s Awards, Arc Thrift Stores’ inaugural Distinguished Disability Leadership Award and NewsED Civil Rights Award.
Prior to her career in the non-profit sector, Michelle was a cable TV pioneer in East Asia working for Liberty Media Corporation and Starz Encore. For her work during that time, she received the 40 Under 40 Achievement Award, the Real Women: Outstanding Entrepreneur Award and the Women in Cable & Telecommunications Walk of Fame Award. Her academic career was focused on international security and diplomacy and she holds a Masters degree and business certificate from Harvard University. She graduated Magna Cum Laude with a Bachelors degree from Tufts University and studied Mandarin Chinese and Women Studies at Peking University. Michelle is married to Tom, a British curator of Chinese contemporary art and they have two children, Sophia, who happens to have Down syndrome and Patrick, who is typical.

Bryn Gelaro joined the GLOBAL team in 2015 as a consultant and is currently the Senior Director of Adult Initiatives and Special Projects. She is a Licensed Social Worker with a background in behavioral health for adults with adults with Down syndrome. Her work includes furthering GLOBAL’s adult care initiatives, serving as an executive committee member and co-author of GLOBAL’s Medical Care Guidelines for Adults with Down syndrome, and managing the development and operations of GLOBAL’s efforts to open a World Class Medical Clinic for adults with Down syndrome. In addition, her role oversees many of GLOBAL’s exciting international projects, including work with Albania, Uganda, and Iceland. Bryn has spoken to parents, educators, and medical professionals at conferences across the nation, including the National Down Syndrome Congress, the Down Syndrome Medical Interest Group, and the Down Syndrome Affiliates in Action. She coauthored research on Down syndrome in Uganda and was a contributor to the Prenatal Testing and Information about Down Syndrome Pamphlet (2nd Ed). Bryn earned her Bachelors of Science in Psychology from the Pennsylvania State University in 2012 and holds a Masters in social work from the University of Chicago’s School of Social Service and Administration in 2015. She completed her Master’s graduate field training at the Adult Down Syndrome Clinic in Chicago, where she facilitated social skills groups, completed assessments, conducted therapy, and occasionally tried to keep up in Zumba class with teens and adults with Down syndrome.

Michael Wells, BS, was the Research Coordinator for the Developmental Disabilities - Practice-Based Research Network (DD-PBRN). The DD-PBRN is a community-based participatory research network comprised uniquely of health care professionals, nurses, residential service providers, advocates and self-advocates. As Research Coordinator, Michael facilitates communication among these stakeholders, partner groups and prospective contacts or partners for future work. A major part of the coordinator role is dissemination of past, present and future work through academic lecture and poster presentations locally, regionally and nationally.
Expert Volunteer Contributors
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)
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)

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
Special Thanks to 2020 GLOBAL Adult Workgroup
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