GLOBAL Medical Care Guidelines for Adults with Down Syndrome
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 completed his undergraduate training at Brown University. He completed his residency and chief residency and earned his medical degree at the University of Pittsburgh. He is a Professor of General Internal Medicine and teaches medical students, residents, and fellows at the University of Pittsburgh. Dr. Bulova is currently involved in research on Alzheimer’s disease in adults with Down syndrome, sits on the NIH National Down Syndrome Registry Data Access Review Committee, and is an ad hoc reviewer for several journals, including the Journal of Intellectual Disability Research and the American Journal on Intellectual and Developmental Disabilities. Dr. Bulova also serves on the Executive Board of the Down Syndrome Medical Interest Group and speaks nationally of the care of adults with Down syndrome.
Since 1990, Dr. Capone has been with the Kennedy Krieger Institute where he currently serves as Director of the Down Syndrome Clinic & Research Center. He is interested in a wide range of topics relevant to people with Down syndrome, including Health Care, Development-Neurobehavior, Mental Health and Sleep Medication trials in children & adults. Dr. Capone lives in Towson, Maryland with his wife, Mary and son, 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 is an Assistant Professor of General Internal Medicine at University of Colorado School of Medicine where he sees patients for primary care and for consultations. He is Board Certified in Family Medicine and has more than 20 years’ experience providing primary health care for adults with disabilities, especially developmental disabilities and Down syndrome. He served as Medical Director of the former Denver Adult Down Syndrome Clinic. Currently, he is the medical director of the Denver Health and GLOBAL adult Down syndrome pilot clinic. Dr. Martin is a member of the National Down Syndrome Congress and the Down Syndrome Medical Interest Group.
Dr. McGuire is a Down syndrome behavioral health expert with more than 30 years of experience in the fields of mental health and developmental disabilities. He is the former Director of Psychosocial Services for the Adult Down Syndrome Center in Chicago, Illinois. He helped establish the center, which serves over 4,000 unique patients annually. Dr. McGuire keynotes at events around the world and is the co-author of two prominent books: Mental Wellness of Adults with Down Syndrome, and The Guide to Good Health for Teens and Adults with Down Syndrome (2011), both by Woodbine House. He received many awards including the National Down Syndrome Congress Theodore D. Tjossem Research Award in 2003 and the World Down Syndrome Day Scientific Award in 2010. McGuire continues to see couples, families, and individuals in a private practice in the Chicago area. Dr. McGuire received his doctorate from the University of Illinois at Chicago and his master’s degree from the University of Chicago.
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 is a Clinical Professor at the University of Kansas Medical Center, Schools of Nursing and Medicine in the Department of Family and Community Medicine. She founded and staffs the adults with Down syndrome specialty clinic. She also teaches in the graduate program at the school of Nursing, and much of her teaching centers around people with disabilities and in particular adults with Down syndrome. Dr. Peterson completed her PhD in 2006 with her dissertation about adults with Down syndrome and their families' concerns about health issues in adulthood. It was the spark that started the clinic when she found there were no specific healthcare providers for adults with Down syndrome in the 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
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
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