2018 Initiatives and Accomplishments
Advancing TS Research
The 2016 Turner Resource Network International Professional Symposium
met in July, 2016 in Cincinnati, with the purpose of revising the 2008 Clinical Practice Guideline, which is projected to be available Spring 2017.
Sponsors included: Turner Syndrome Society, Turner Syndrome Global Alliance, the National Institutes of Health (NICHD), Pediatric Endocrine Society (PES), European Society for Pediatric Endocrinology (ESPE), American Heart Association, Leaping Butterfly Ministries, TSSUS Colorado Chapter, and Gamers for Cures.
The Turner Syndrome Research Registry, a TSSUS initiative, was launched with the goal of recruiting 500 participants by 2017. The registry is unique because it is a patient powered database. Registry surveys are created by TS researchers and patients and families enter their responses. The participant controls the information, she determines who may access the data, if/how she may be communicated with, what data may be shared and for how long it may be used. TSSUS manages and sponsors the registry and the TSRR is endorsed by 2 other TS organizations.
The resulting publication from the 2014 Professional Symposium in Jacksonville, FL, "Turner Syndrome Health and Wellness in the 21st Century," was published in the American Journal of Medical Genetics.
The purpose was to determine the greatest healthcare needs in the TS community.
TSSUS proudly supported these research studies in 2016:
“Aortic Dimensions in Turner Syndrome” published in the American Journal of Medical Genetics; supported by TSSUS members (attending the national conferences).
Bone and Cardiometabolic Health and Research Study at Children's Hospital of Philadelphia (CHOP)
Risk of Diabetes in Girls and Young Women with Turner Syndrome study at Cincinnati Children's Hospital
"Describing Lymphedema in Girls and Women with Turner Syndrome "- published in Lymphology ( journal)
Sense of Virtual Community in Online Communities for Turner Syndrome- University of Windsor