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Research
Scientists across the world are working towards greater discoveries to impact quality of life through translational research to integrate advancements in molecular biology with clinical trials, taking research from the bench-to-bedside.
Research is a Team Effort
Disparity in Research
New Diagnostic Tool
Participate in Research
Newborn Screening
How You Can Help
Turner Syndrome Research is a Team Effort
Patients can actively contribute to new science by LEARNING how they can contribute to clinical research.
For the Researcher
Since its inception in 2009, TSF has supported research initiatives by referring families affected by TS to participate in studies at such pioneering facilities as Stanford Center for Interdisciplinary Brain Science Research, Nemours Children’s Hospital, the National Institutes of Health, University of Chapel Hill, Rush University, Coriell Laboratories/NGIMS and JS Genetics Laboratories.
Disparity in TS Research
One factor contributing to slow progress in TS may be the relatively modest research funding currently allocated to this condition. No current NIH-funded extramural animal or basic science award is expressly focused on TS and this disparity is also highlighted by a recent 2010 Institute of Medicine report that emphasizes the need for new research expressly focused on women's health issues.
A New Diagnostic Tool
In March of 2011, a new and convenient test for diagnosing TS, the XCAT-TS, was introduced by JS Genetics after significant patient participation in their NIH funded study. The test can be administered by physicians and requires only a check swab; results can be available within 3 days of sample receipt at JS Genetics labs. In clinical practice this test will detect 98% of girls with the condition. A recently validation study for this test has been published J Clin Endocrinol Metab. A highly sensitive, high-throughput assay for the detection of turner syndrome. 2011 Mar;96(3):699-705.
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Participate in Research
EDUCATE BEFORE PARTICIPATION
The top five reasons people participate in research studies:
- To advance medicine: 51%
- To find a better treatment for my condition: 46%
- To help others with my condition: 39%
- To earn extra money: 36%
- My doctor recommended it: 31%
Education Before Participation
Adults
Children - English Spanish
Placebo - English Spanish
Understanding clinical trials - U.S. National Library of Medicine frequently asked questions.
FINDING A CLINICAL TRIAL THAT IS RIGHT FOR YOU
Clinicaltrials.gov Search completed and actively recruiting studies
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- Comprehensive Study at Center for Interdisciplinary Brain Sciences Research at Stanford University Information Flyer
- NIGMS Repository at Coriell Institute for Medical Research "Banking for the future by donating a sample to a cell repository is an investment that has the potential to greatly accelerate, improve and advance scientific research on Turner syndrome." Letter Information Flyer NJ Collection Site
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Newborn Screening
Centers for Disease Control on Newborn Screening
Learn about newborn screening. Watch the Newborn Screening Video
Learn about newborn screening bloodspot - About Bloodspot
Learn what your state screens for - State Screening
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How You Can Help
Advocacy
Speak up, speak out. Join our Advocacy Team in support of legislature that will provide funding allocated specifically for Turner Syndrome. Go to Advocacy web page
Team TSF
Activity programs not only provide valuable financial resources, but they increase publicResearch is crucial for a multiple of manifestations found in Turner Syndrome. Patients, members of the public, healthcare professionals and the media must realize the importance of TSF’s goals to support research initiatives.
Go to Team TSF web page
There are ways you can help:
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Educate yourself to make an informed decision before participating in a study. Assess if the study is right for you.
- Participate in a study in which you qualify.
- Donate to show your support of our mission!
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