![]() To learn more or sign up, please click here. 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.Ī webinar and Q&A with the renowned and expert authors will be held on Wednesday, October 21, 2020. GLOBAL has support from over 50 local, national, and international Down syndrome organizations and several generous sponsors. However, printing and downloading for personal and clinical use is highly encouraged. 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. “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.”Īlan echoes his mom’s sentiments, “ 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. “From the beginning, GLOBAL has been leading the way, empowering people with Down syndrome with improved care and health outcomes,” says mom Darlene Beals. “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.” “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. “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.”Īuthor 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. “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. 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. Some of the recommendations align with existing guidelines for individuals without Down syndrome, and two are markedly different. It is made up of 14 recommendations and 4 statements of good practice. ![]() 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. “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.” “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). ![]() 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. 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. ![]() OctoDenver, CO – 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. ![]()
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