The meeting: ?Turner Resource Network Symposium (TRN): Turner Science in the 21st Century? will be held on July 15th-17th, 2018 in Arlington Virginia in conjunction with the 31nd annual meeting of the Turner Syndrome Society of the United States (TSSUS). Turner syndrome is one of the most common genetic syndromes, occurring in 1 in 2,500 live born females; however, very few investigators are conducting research in TS. The 2018 TRN symposium will focus on advancing TS health science with the ultimate goal of decreasing morbidity and mortality in this underserved population. The TRN began in 2014 as a coalition of scientists, clinicians, and individuals with TS and their families working together to develop a strategic plan for the development of a national effort to improve the health and well-being of those living with TS. The inaugural symposium brought together this community for the first time. The 2016 meeting created the Turner Syndrome Research Registry (the TSRR; www.turnersyndrome.org/ts-registry-love/) which is currently approaching 1000 subjects. In addition, the 2016 meeting gathered an international panel of experts to revise the clinical guidelines for the care of individuals with TS. The major aim of this conference is to promote research in TS that will translate into better care of our patients by: 1) discussing the biology of TS and how an understanding of sex chromosome deficiency (the cause of TS) can provide insights into TS disease phenotypes 2) to support TS researchers' interests and attract new investigators from a variety of fields who might find TS to be a useful model for their research areas of interest; 3) to develop strategies that will strengthen and promote the TSRR.

Public Health Relevance

Turner syndrome (TS) is a rare condition affecting approximately eighty thousand girls and women in the United States, but there has been no concerted effort by the research community to articulate the important health questions facing those with TS. The primary goal of the 'Turner Resource Network Symposium (TRN): Turner Science in the 21st Century' is to develop a network of both clinical and basic research scientists who are dedicated to understanding the causes of the many health problems and quality of life challenges facing the girls and women with TS. This third TRN symposium, through promoting Turner syndrome science, will help to create new clinical pathways and lead to future evidence-based recommendations, and will thereby promote the health and well-being of the girls and women who live with TS.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Conference (R13)
Project #
1R13HD096857-01
Application #
9612895
Study Section
National Institute of Child Health and Human Development Initial Review Group (CHHD)
Program Officer
Taymans, Susan
Project Start
2018-07-06
Project End
2019-06-30
Budget Start
2018-07-06
Budget End
2019-06-30
Support Year
1
Fiscal Year
2018
Total Cost
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