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
Need assistance? CONTACT US
FINDING A CLINICAL TRIAL THAT IS RIGHT FOR YOU
- www.TSRX.us This is a TSF research initiative in conjunction with Invitae establishing a global registry. This Patient Information Network is an online platform. It is free to join and your information is de-identified. Users see the general responses of others and have found this to be meaningful on their journey with TS. Individuals with TS and their caregivers are encouraged to create a profile and password to contribute to new research.
- Blood and Tissue Banking: 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.” More information and to order your collection kit
- Adult Study 5 Day Stay at the NIH – 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
- Cardiovascular health – Please contact Dr. Prakash to volunteer: TSRegistry@uth.tmc.edu more info
- Parent Survey – Sex Chromosome Aneuploidies: Parent Perspectives on Delivery of Diagnosis more info
- Adult Access to Care Survey – Can you find adult care? more info 18+ Access to Care Survey
- CLINICAL TRIALS.GOV Search completed and actively recruiting studies posted by the US Government
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. If interested in joining the Research Committee, please Contact Us.
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.
Did you know?
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%
NIH Children and Clinical Studies
The Importance of Children in Clinical Studies
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