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What is the Turner Syndrome Anxiety Project?

The Turner Syndrome Anxiety Project is a collaboration between Turner Syndrome Colorado and the eXtraOrdinarY Kids Clinic and Research Team at Children’s Hospital Colorado to respond to parent and patient questions about anxiety in Turner syndrome. Completed and ongoing studies from the TS Anxiety Project include:

Engaging families and youth to address the disparity of under-diagnosis of anxiety among girls and young women with Turner syndrome.
Study Dates: 5/1/2022-4/30/23
Funder: Colorado Clinical and Translational Sciences Institute (CCTSI)
Summary of the project: This study aimed to engage the TS community in research to improve our understanding of anxiety symptomatology, diagnosis, and care in individuals with TS

Recognizing Anxiety in Turner syndrome Early (RATE): Development and validation of a clinic administered screening instrument
Study Dates: 09/01/2023-08/31/2024
Funder: The Ludeman Center for Women’s Health Research
Summary: The overarching goal of the RATE project is to adapt and validate a critically needed pediatric anxiety screening tool for youth with TS and to pilot its implementation in a clinical setting.

TS Anxiety Project Products:
10 Things We Learned About Anxiety in Turner Syndrome YouTube video

The Colorado Pragmatic Research in Health Conference (COPRH Con) poster

The Colorado Pragmatic Research in Health Conference (COPRH Con) abstract

3 one-page handouts (see below): Click HERE to access the folder with printable copies of each

Published manuscript from phase 1: Click HERE

Family Resources:

National Alliance on Mental Illness (NAMI) - anxiety disorders informational webpage:

Anxiety: Helping Handout for School and Home from the National Association of School Psychologists (NASP):

School Refusal: Information for Educators from the National Association of School Psychologists (NASP):

National Institutes of Mental Health (NIMH)- Guided Visualization for Managing Stress:

Mental Health Minute: Stress and Anxiety in Adolescents- brief video from National Institutes of Health:

I’m so Stressed Out Fact Sheet:

Generalized Anxiety Disorder: When Worries get Out of Control:

Social Anxiety Disorder: More than Just Shyness:

Panic Disorder: When Fear Overwhelms:

Obsessive-Compulsive Disorder: When Unwanted Thoughts or Repetitive Behaviors Take Over:

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