TRN Symposium 2016: Consensus Study Group Meeting for the Care of Girls and Women with Turner Syndrome

2016 年 TRN 研讨会：特纳综合症女孩和妇女护理共识研究小组会议

• 批准号: 9194835
• 负责人: GARY MICHAEL SILBERBACH
• 金额: $ 1.1万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-07-01 至 2017-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9194835
• 关键词: American; Area; Cardiac; Caring; Consensus; Development; Endocrine; European; Family; General Population; Goals; Group Meetings; Health; Health Care Research; Healthcare; Individual; International; Journals; Life; Medical; Medical Societies; Monitor; Ohio; Patients; Publishing; Recommendation; Scientist; Societies; Surveys; Turner' s Syndrome; United States; Update; Woman; clinical care; evidence base; girls; meetings; symposium

Project Summary The “Consensus Study Group Meeting for the Care of Girls and Women with Turner Syndrome ” will be held on July 24th - 26th 2016 Cincinnati Ohio in conjunction with the 29th annual meeting of the Turner Syndrome Society of the United States (TSSUS). Nearly ten years after experts in cardiac, endocrine, developmental, and other areas of care of girls and women with Turner syndrome issued the last consensus group statement it is essential to determine which of those recommendations remain relevant today, and which ones need to be updated or discarded. This symposium will gather international experts who are widely published in the clinical care of girls and women who live with Turner syndrome. In addition, individuals who live with Turner syndrome will actively participate. These special delegates will present the results of a comprehensive scientific survey of the patients' perspective. In addition, representatives from the major American and European medical societies will participate. The specific aims of the symposium are to arrive at a comprehensive study group consensus for the best way to monitor the health of the girls and women who live with Turner syndrome and to publish a document that grades the scientific evidence for a comprehensive list of Turner syndrome specific health management strategies.

项目摘要 “照顾特纳综合症女孩和妇女的共识研究小组会议“将于 2016年7月24日至26日辛辛那提俄亥俄州与特纳综合征第29届年会 美国社会（TSSUS）。在心脏、内分泌、发育和 特纳综合征女孩和妇女的其他护理领域发表了最后一份共识小组声明， 必须确定哪些建议今天仍然适用，哪些建议需要 更新或丢弃。本次研讨会将聚集在临床广泛发表的国际专家， 照顾患有特纳综合症的女孩和妇女。此外，与特纳一起生活的人 综合征将积极参与。这些特别代表将介绍一项全面的 对病人观点的科学调查。此外，来自美国主要国家和 欧洲医学会将参加。研讨会的具体目标是达成一项 全面的研究小组共识，以最好的方式来监测女孩和妇女的健康生活 特纳综合征，并发表一份文件，对科学证据进行分级， 特纳综合征的具体健康管理策略。