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.

Public Health Relevance

The 80,000 girls and women in United States who live with Turner syndrome require unique medical care strategies compared to the general population. Nearly ten years after experts in cardiac, endocrine, developmental, and other areas of care of girls and women with Turner syndrome issued a consensus group statement it is essential to determine which of those recommendations remain relevant today, and which ones need to be updated or discarded. The goal of our conference is for the major stake holders: individuals with TS and their families, expert clinicians dedicated to TS health care, and research scientists to meet and arrive at up-to-date and evidence-based consensus statement for the health care of girls and women with Turner syndrome.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Conference (R13)
Project #
1R13HD089663-01
Application #
9194835
Study Section
Special Emphasis Panel (CHHD1-A)
Program Officer
Winer, Karen
Project Start
2016-07-01
Project End
2017-06-30
Budget Start
2016-07-01
Budget End
2017-06-30
Support Year
1
Fiscal Year
2016
Total Cost
$11,000
Indirect Cost
Name
Oregon Health and Science University
Department
Pediatrics
Type
Schools of Medicine
DUNS #
096997515
City
Portland
State
OR
Country
United States
Zip Code
97239