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.
Turner syndrome (TS) is a rare disorder affecting only girls and women but health care delivery systems for TS are fragmented and lack resources. Furthermore, there has been no concerted effort by the health research community to articulate the important research questions facing those with TS. The primary goal of our symposium is to develop a strategy to create a national program that will coordinate excellent health care delivery to the girls and women living with TS and also to conduct fundamental TS research through the fledgling regional TS resource centers.
| Backeljauw, Philippe F; Bondy, Carolyn; Chernausek, Steven D et al. (2015) Proceedings from the Turner Resource Network symposium: the crossroads of health care research and health care delivery. Am J Med Genet A 167A:1962-71 |
