Health and Wellness in Turner Syndrome in the 21st Century

21 世纪特纳综合症的健康与保健

• 批准号: 8652173
• 负责人: GARY MICHAEL SILBERBACH
• 金额: $ 1万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-06-01 至 2015-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8652173
• 关键词: Affect; American; Collaborations; Communities; Country; Development; Disease; Family; Florida; Goals; Health; Health Services Research; Healthcare; Individual; Life; Light; Maps; Medical; Personal Satisfaction; Rare Diseases; Research; Research Personnel; Resources; Scientist; Societies; Strategic Planning; System; Time; Turner' s Syndrome; United States; United States National Institutes of Health; Woman; Women' s Health; Work; girls; health care delivery; improved; meetings; programs; public health relevance; symposium

DESCRIPTION (provided by applicant): The meeting: "Turner syndrome health and wellness in the 21st Century: The crossroads of health care research and health care delivery" will be held on July 13th and 14th 2014 in Jacksonville Florida in conjunction with the 27th annual meeting of the Turner Syndrome Society of the United States (TSSUS). TS health care delivery systems around the country are fragmented and lack resources. At the same time, there are vital yet unaddressed TS-related research questions that have the potential to shed light on a variety of disorders facing all Americans. Importantly, there has been no concerted effort by the health research community to articulate the important issues involved. As the initial step toward establishing a federally-mandated comprehensive TS health care program we will bring together a group of scientists, clinicians, and individuals with TS and their families in order to develop a strategic plan for the development of the Turner Resource Network (the TRN). This proposal is the product of a fruitful collaboration between the TSSUS, a grass roots organization that includes more than 3,000 girls and women with TS throughout the USA and a group of TS researchers/clinicians that form the TSSUS professional advisory board. We hope that our conference will serve to energize the stakeholders in both the scientific and health care delivery communities and will also kick start a national effort to improve the health and well-being of those living with TS. The major aims of this conference are to 1) Identify and discuss the major health care problems and unmet medical needs of the TS community, 2) Identify and discuss major research questions facing those with TS and how they might best by studied, 3) Discuss how a partnership between the NIH and the fledgling TS regional resource centers around the USA could work to accomplish research goals and to simultaneously deliver state-of-the-art health care to girls and women with TS, 4) Establish a road-map going forward to establish the TRN within the next 4 years.

描述（由申请人提供）：会议：“21世纪的特纳综合征健康与保健：医疗保健研究和医疗保健服务的十字路口”将于2014年7月13日至14日在佛罗里达州杰克逊维尔举行，同时举行第27届美国特纳综合征学会年会（TSSUS）。全国各地的TS卫生保健提供系统支离破碎，缺乏资源。与此同时，还有一些重要的尚未解决的与ts相关的研究问题，这些问题有可能揭示所有美国人面临的各种疾病。重要的是，卫生研究界没有齐心协力阐明所涉及的重要问题。作为建立联邦政府授权的综合TS医疗保健计划的第一步，我们将召集一组科学家、临床医生和TS患者及其家人，以制定一项新的医疗保健计划