DENVER, Oct. 20, 2020 /PRNewswire/ — After four years of coordination, compilation, and rigorous assessment and writing, the Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome© (Global Guideline) is complete and available at no cost.
The authors include the clinical directors of eight of the largest adult Down syndrome medical centers in the country – Advocate Health Care in Chicago, University of Pittsburgh Medical Center, Kennedy Krieger Institute at Johns Hopkins School of Medicine, University of Kansas Medical Center, University of Arkansas for Medical Sciences, and Denver Health in conjunction with the Anschutz Medical Campus School of Medicine at University of Colorado.
The first-in-kind Global 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.
«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 (GLOBAL). «Now we can focus on collaborating with other Down syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes.»
The Global Guideline is for clinicians and addresses nine medical areas: Behavioral Health, Dementia, Diabetes, Cardiovascular Disease, Obesity, Atlantoaxial Instability, Osteoporosis, Thyroid, and Celiac Disease.
It is made up of 14 recommendations and 4 statements of good practice. Some of the recommendations align with existing guidelines for individuals without Down syndrome, and two are markedly different. There were several questions associated with the recommendations that had no published research evidence, and therefore were answered based on the clinical expertise of the authors.
«It’s clear that the lack of Down syndrome research funding over the last 20 years has prevented us from easily or quickly creating these guidelines,» says Bryn Gelaro, LSW, Director of Adult Initiatives & Special Projects at GLOBAL. «We were fortunate to have expert authors and volunteers who helped identify important research needs that will bolster and better define our future Global Guideline recommendations.»
Author Amy Tsou, MD, from ECRI, an independent nonprofit and Evidence-based Practice Center, with support from Gelaro, helped spearhead the research methodology, which included PICO (Population/Intervention Comparison/Outcome) questions, the GRADE (Grading of Recommendations, Assessment, Development, and Evaluation) methodology, and focus groups from various stakeholders informed the final draft.
«I participated in the task force of over 40 self-advocates and family members that provided GLOBAL with the directive they needed to focus on adult care guidelines – even if it would be difficult and take a lot of time,» says Karen Gaffney, a nationally renowned athlete, GLOBAL Q-Awardee and spokesperson. «It was great to be able to participate in the week-long focus group of self-advocates and family members and see it all come together.»
«From the beginning, GLOBAL has been leading the way, empowering people with Down syndrome with improved care and health outcomes,» says mom Darlene Beals. «The Global Guideline is an important new resource for my 24-year-old son Alan, and I believe if anyone can get to the bottom of health disparities for African Americans with Down syndrome, it’s GLOBAL.»
Alan echoes his mom’s sentiments, «[I want to know] when to take thyroid medicine, once a day? How to live a healthy life in my own apartment and keep the apartment clean?» Alan is also concerned about doctors knowing how to pay Medicaid insurance.
While the Global Guideline is free of charge to any stakeholder, the copyright of the JAMA publication and of GLOBAL’s long-form publication prohibits the reproduction of the Global Guideline on any website or digital platform. However, printing and downloading for personal and clinical use is highly encouraged.
GLOBAL has support from over 50 local, national, and international Down syndrome organizations and several generous sponsors. By the end of 2021, GLOBAL plans to translate and distribute this transformative new resource into several languages, and to update and expand the Global Guideline every 6 years.
A webinar and Q&A with the renowned and expert authors will be held on Wednesday, October 21, 2020. To learn more or sign up, please click here.
The Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup includes (in alphabetical order of lead and supporting authors):
- Peter Bulova, MD: Associate Professor of Medicine, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania
- George Capone, MD: Director, Down Syndrome Clinic & Research Center, Kennedy Krieger Institute, Associate Professor of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland
- Brian Chicoine, MD: Medical Director, Advocate Medical Group Adult Down Syndrome Center, Park Ridge, Illinois
- Terry Odell Harville, MD, PhD, D(ABMLI) D(ABHI): Professor of Pathology and Laboratory Services, and Internal Medicine, Department of Pathology and Laboratory Services, and Department of Internal Medicine, Division of Hematology, University of Arkansas for Medical Sciences, Little Rock, Arkansas
- Barry A Martin, MD: Associate Professor of Clinical Practice, Division of General Internal Medicine, University of Colorado School of Medicine, Anschutz Medical Center, Aurora, Colorado
- Dennis McGuire, LCSW, PhD: Private Practice, Evanston, Illinois
- Kent D. McKelvey, MD: Associate Professor, Rockefeller Chair in Clinical Genetics, University of Arkansas for Medical Sciences, Little Rock, Arkansas
- Moya Peterson, PhD, APRN, FNP-BC: Clinical Professor, University of Kansas Medical Center, Schools of Nursing and Medicine, Kansas City, Kansas
- Amy Y Tsou, MD, MSc: Evidence-based Practice Center, ECRI Center for Clinical Excellence and Guidelines, Plymouth Meeting, Pennsylvania; Staff Neurologist, Division of Neurology, Michael J Crescenz Veterans Affairs Medical Center, Philadelphia, Pennsylvania
- Carl Tyler, MD, MSc: Director of Developmental Disabilities – Practice-Based Research Network, and Professor, Family Medicine and Community Health, Cleveland Clinic Lerner College of Medicine, Case Western Reserve University School of Medicine, Cleveland, Ohio
- Michelle Sie Whitten, MA: President & CEO, Global Down Syndrome Foundation, Denver, Colorado
- Bryn Gelaro, MA, LSW: Director of Adult Initiatives, Global Down Syndrome Foundation, Denver, Colorado
- Michael Wells, BS: Formerly Research Coordinator, Developmental Disabilities – Practice-Based Research Network, Cleveland, Ohio
About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 150 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.
GLOBAL’s widely-circulated medical publications include GLOBAL Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome World™. GLOBAL organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook, Twitter @GDSFoundation, Instagram @globaldownsyndrome).
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SOURCE Global Down Syndrome Foundation