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Translational science of rare diseases · 2021

Opportunities, barriers, and recommendations in down syndrome research.

СтатьяНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
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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, Wong Guang William, Yi John S

Аннотация

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.

ИП Урсолов Владлен Сергеевич

ИНН 500118482352 · ОГРНИП 314500117700049

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