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2018   Iniciativas y logros
Avanzando en la investigación de TS

Professional Symposium

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.

Research Registry

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.

Journal Publication

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.

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TSSUS apoyó con orgullo estos estudios de investigación en 2016:

"Dimensiones aórticas en el síndrome de Turner" publicado en el American Journal of Medical Genetics; apoyado por miembros de TSSUS (asistiendo a las conferencias nacionales).

Estudio de investigación y salud ósea y cardiometabólica en el Children's Hospital of Philadelphia (CHOP)

Sentido de comunidad virtual en comunidades en línea para el síndrome de Turner - Universidad de Windsor

Programas y servicios de apoyo
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