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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.

There is significant need for a comprehensive and descriptive database of girls and women with Turner syndrome (TS), which would provide an important medical resource to primary care physicians, endocrinologists and genetic counselors.  A collaboration and partnership of the Turner Syndrome Foundation and the Genetic Counseling Department at Arcadia University is investigating the process of diagnosis that girls with TS have experienced as well as exploring the prevalence of potential cognitive symptoms in TS, including learning disabilities, through an online survey. Particularly, this study is focused on finding the prevalence of delayed diagnosis in girls with TS and how these specific symptoms may or may not be frequent enough to influence the process of diagnosis for girls with TS.

This study can be completed through an online survey that is conducted through SurveyMonkey. This survey can be completed by a parent/guardian of a child with Turner syndrome. If you are interested in participating in this IRB approved study, you can access the online survey through this link:
https://www.surveymonkey.com/s/Z9R3DYX

The Turner Syndrome Foundation is also currently organizing an online registry to learn more information about its members. If you are interested in signing up for this registry, you can access the registration form through this link:
https://www.surveymonkey.com/s/GVX6FTH
The information obtained from the registry will be kept separate from any information submitted through the survey. 


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
.
  • 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:



  • 
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!