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.
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, Arcadia University, Coriell Laboratories/NGIMS and JS Genetics Laboratories.
Patients and caregiver of young children are urged to become part of the solution to improved quality of care for all girls with Turner Syndrome.
Join the TSF Patient Registry.
Animamos a los médicos a informar a los pacientes sobre el Registro de Pacientes con Síndrome de Turner
TSF REGISTRO DE PACIENTES- ESPAÑOL
Research is a Team Effort
Disparity in Research
Education Before Participation
How You Can Help
Finding a Trial That is Right for You
Turner Syndrome Research is a Team Effort
Patients can actively contribute to new science by LEARNING how they can contribute to clinical research. In an effort to expand new science a patient registry has been established. Contact Dr. Danielle Moore, PhD at firstname.lastname@example.org with any questions.
Turner Syndrome Foundation Patient Registry
The Turner Syndrome Foundation is an advocacy organization dedicated to improving the lives affected by this complex disorder. If you have not already registered to receive timely and up-to-date information about current information, events, and opportunties, please complete this brief survey.
Join the TSF Patient Registry TSF REGISTRO DE PACIENTES- ESPAÑOL
Disparity in TS Research
One factor contributing to slow progress in Turner Syndrome 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.
back to top
Clinicaltrials.gov Search completed and actively recruiting studies
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%
The Importance of Children in Clinical Studies Video
Why Clinical Studies are Important Video
Safety and Protection Video
Rights of Families in Studies Read
You Can Say No At Any Time Video
Minority Interets and Questions Video
The Research Team Video
Good Questions to Ask Video
The Cost of Participation Video
Do Children Get to Consent Read
Effect on the Family Video
What Children Say About Being in a Study Video
Leaving a Study Video
When a Study Ends Video
How to Find Reliable Information Video
Searching Clinical Trials Video
Related Materials Read
Understanding clinical trials - U.S. National Library of Medicine frequently asked questions.
FINDING A CLINICAL TRIAL THAT IS RIGHT FOR YOU
- Risk of Diabetes in Young Turner Syndrome patient at Cincinnati Children’s Hospital
Recruiting: Girls 6 to 22 years old
Participation may involve: oral glucose tolerance test, physical exam, and blood testing
Potential benefits of participation include furthering our understanding of diabetes in Turner Syndrome
Families will receive $100 honorarium for participating
Written report provided, including results of a blood testingContact Nicole Sheanon or Philippe Backeljauw at Nicole.Sheanon@cchmc.org or (513)636-4549 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."
- Request a blood collection kit by contacting
Tara Schmidlen, MS, CGC at 856-757-4822
- Letter Information Flyer
- NHGRI is seeking people with abnormalities involving the sex chromosomes, such as Turner syndrome and Klinefelter syndrome. Researchers want to better understand how these conditions affect overall health and wellbeing. Learn more: http://go.usa.gov/cKp92
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
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.
- Join the patient registry
- Participate in a study in which you qualify.
- Donate to show your support of our mission!
- Student school project information request form