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Opportunities, barriers, and recommendations in down syndrome research.
Hendrix, James A; Amon, Angelika; Abbeduto, Leonard; Agiovlasitis, Stamatis; Alsaied, Tarek; Anderson, Heather A; Bain, Lisa J; Baumer, Nicole; Bhattacharyya, Anita; Bogunovic, Dusan; Botteron, Kelly N; Capone, George; Chandan, Priya; Chase, Isabelle; Chicoine, Brian; Cieuta-Walti, Cécile; DeRuisseau, Lara R; Durand, Sophie; Esbensen, Anna; Fortea, Juan; Giménez, Sandra; Granholm, Ann-Charlotte; Hahn, Laura J; Head, Elizabeth; Hillerstrom, Hampus; Jacola, Lisa M; Janicki, Matthew P; Jasien, Joan M; Kamer, Angela R; Kent, Raymond D; Khor, Bernard; Lawrence, Jeanne B; Lemonnier, Catherine; Lewanda, Amy Feldman; Mobley, William; Moore, Paul E; Nelson, Linda Pollak; Oreskovic, Nicolas M; Osorio, Ricardo S; Patterson, David; Rasmussen, Sonja A; Reeves, Roger H; Roizen, Nancy; Santoro, Stephanie; Sherman, Stephanie L; Talib, Nasreen; Tapia, Ignacio E; Walsh, Kyle M; Warren, Steven F; White, A Nicole.
Afiliação
  • Hendrix JA; LuMind IDSC Foundation, Burlington, MA, USA.
  • Amon A; Deceased. Koch Institute for Integrative Cancer Research, Massachusetts Institute of Technology, Cambridge, MA, USA; Department of Biology, Massachusetts Institute of Technology, Cambridge, MA, USA; Howard Hughes Medical Institute, Chevy Chase, MD, USA.
  • Abbeduto L; Department of Psychiatry and Behavioral Sciences, University of California, Davis, CA, USA; MIND Institute, University of California, Davis, CA, USA.
  • Agiovlasitis S; Department of Kinesiology, Mississippi State University, Mississippi State, MS, USA.
  • Alsaied T; Heart Institute Department of Pediatrics Cincinnati Children's Hospital Medical Center University of Cincinnati, Cincinnati, OH, USA.
  • Anderson HA; The Ohio State University College of Optometry, Columbus, OH, USA.
  • Bain LJ; Independent Science Writer, Elverson, PA, USA.
  • Baumer N; Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA; Down Syndrome Program, Developmental Medicine Center, Boston Children's Hospital, Boston, MA, USA.
  • Bhattacharyya A; Waisman Center, University of Wisconsin-Madison, Madison, WI, USA.
  • Bogunovic D; Department of Cell and Regenerative Biology, School of Medicine and Public Health, University of Wisconsin-Madison, Madison, WI, USA.
  • Botteron KN; Department of Microbiology, Icahn School of Medicine at Mt. Sinai, New York, NY, USA; Department of Pediatrics, Icahn School of Medicine at Mt. Sinai, New York, NY; Precision Immunology Institute, Icahn School of Medicine at Mt. Sinai, New York, NY, USA; Mindich Child Health and Development Institut
  • Capone G; Department of Psychiatry, Washington University School of Medicine, St. Louis, MO, USA; Mallinckrodt Institute of Radiology, Washington University School of Medicine, St. Louis, MO, USA.
  • Chandan P; Kennedy Krieger Institute, Baltimore, MD, USA.
  • Chase I; Department of Neurosurgery, Division of Physical Medicine and Rehabilitation, University of Louisville School of Medicine, Louisville, KY, USA.
  • Chicoine B; Department of Pediatric Dentistry, Boston Children's Hospital, Boston, MA, USA.
  • Cieuta-Walti C; Advocate Medical Group Adult Down Syndrome Center, Park Ridge, IL, USA.
  • DeRuisseau LR; Department of Pediatrics, University of Sherbrooke, Quebec, Canada.
  • Durand S; Department of Biological Sciences, Le Moyne College, Syracuse, NY, USA.
  • Esbensen A; Institut Jérôme Lejeune, CRB BioJeL, Paris, France.
  • Fortea J; Department of Pediatrics, University of Cincinnati College of Medicine & Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
  • Giménez S; Barcelona Down Medical Center, Fundació Catalana de Síndrome de Down, Barcelona, Spain; Sant Pau Memory Unit, Department of Neurology, Hospital de la Santa Creu i Sant Pau, Biomedical Research Institute Sant Pau, Universitat Autònoma de Barcelona, Barcelona, Spain; Center of Biomedical Investigation
  • Granholm AC; Multidisciplinary Sleep Unit, Respiratory Department, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain.
  • Hahn LJ; Knoebel Institute for Healthy Aging, University of Denver, Denver, CO, USA.
  • Head E; Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden.
  • Hillerstrom H; Department of Speech and Hearing Science, University of Illinois Urbana Champaign, Champaign, IL, USA.
  • Jacola LM; Department of Pathology and Laboratory Medicine, UC Irvine School of Medicine, Orange, CA, USA.
  • Janicki MP; LuMind IDSC Foundation, Burlington, MA, USA.
  • Jasien JM; Department of Psychology, St Jude Children's Research Hospital, Memphis, TN, USA.
  • Kamer AR; University of Illinois at Chicago, Chicago, IL, USA.
  • Kent RD; Division of Pediatric Neurology, Duke University Health System, Durham, NC, USA.
  • Khor B; Department of Periodontology and Implant Dentistry, New York University, College of Dentistry, New York, NY, USA.
  • Lawrence JB; Waisman Center, University of Wisconsin-Madison, Madison, WI, USA.
  • Lemonnier C; Benaroy Research Institute at Virginia Mason, Seattle, WA, USA.
  • Lewanda AF; Department of Neurology, University of Massachusetts Medical School, Worcester, MA, USA; Department of Pediatrics, University of Massachusetts Medical School, Worcester, MA, USA.
  • Mobley W; Institut Jérôme Lejeune, CRB BioJeL, Paris, France.
  • Moore PE; Children s National Rare Disease Institute, Children's National Health System, Washington, DC., USA.
  • Nelson LP; Department of Neurosciences, University of California, San Diego, CA, USA.
  • Oreskovic NM; Division of Allergy, Immunology, and Pulmonology, Vanderbilt University Medical Center, Nashville, TN, USA; Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA.
  • Osorio RS; Harvard School of Dental Medicine, Boston, MA, USA.
  • Patterson D; Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA; Department of Internal Medicine, Massachusetts General Hospital, Boston, Mass.
  • Rasmussen SA; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
  • Reeves RH; Center for Brain Health, Department of Psychiatry, NYU Langone Medical Center, New York, NY, USA.
  • Roizen N; Knoebel Institute for Healthy Aging, University of Denver, Denver, CO, USA.
  • Santoro S; Eleanor Roosevelt Institute, University of Denver, Denver, CO, USA; Department of Biological Sciences, University of Denver, Denver, CO, USA; Molecular and Cellular Biophysics Program, University of Denver, Denver, CO, USA.
  • Sherman SL; Department of Pediatrics, University of Florida College of Medicine, Gainesville, FL; Department of Epidemiology, University of Florida College of Public Health and Health Professions and College of Medicine, Gainesville, FL.
  • Talib N; Department of Physiology, Johns Hopkins University School of Medicine, Baltimore, MD, USA; McKusick-Nathans Department of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
  • Tapia IE; Department of Pediatrics, UH/Rainbow Babies and Children's Hospital and Department of Pediatrics, Case Western Reserve University, Cleveland, OH, USA.
  • Walsh KM; Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
  • Warren SF; Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
  • White AN; Department of Human Genetics, Emory University School of Medicine, Atlanta, GA, USA.
Transl Sci Rare Dis ; 5(3-4): 99-129, 2021.
Article em En | MEDLINE | ID: mdl-34268067
BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community. OBJECTIVE: The National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan. METHODS: NDSS and LuMind IDSC assembled over 50 experts across multiple disciplines and organized them in eleven working groups focused on specific issues for people with DS. RESULTS: This review article summarizes the research gaps and recommendations that have the potential to improve the health and quality of life for people with DS within the next decade. CONCLUSIONS: This review highlights many of the scientific gaps that exist in DS research. Based on these gaps, a multidisciplinary group of DS experts has made recommendations to advance DS research. This paper may also aid policymakers and the DS community to build a comprehensive national DS research strategy.
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Texto completo: 1 Base de dados: MEDLINE Tipo de estudo: Guideline Idioma: En Revista: Transl Sci Rare Dis Ano de publicação: 2021 Tipo de documento: Article País de afiliação: Estados Unidos
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Base de dados: MEDLINE Tipo de estudo: Guideline Idioma: En Revista: Transl Sci Rare Dis Ano de publicação: 2021 Tipo de documento: Article País de afiliação: Estados Unidos