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
Current Research Opportunities
- NIH COVID Impact Study– Researchers at the NIH aim to understand how COVID has impacted individuals who are affected by rare conditions. In October 31, 2020 data had been collected. For more information go to: https://covid19.nih.gov/
- Turner Syndrome Transition Study– Nisha Patel at Nationwide Children’s Study is conducting an online survey to understand how pediatric patients with TS transition to adult health care, to assess how accommodations may be improved. Individuals ages 12-25 may participate. Ends November 15, 2020
- Ethnographic and Theatrical Study- AJ Jones, an anthropology graduate student at Emory University is conducting a study about TS identities and communities. Individuals can participate in a virtual interview. Contact AJ for scheduling- 339-234-1020 or email@example.com.
Ongoing Research Opportunities
- 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
- UT Health: Join the registry to participate in ongoing research projects. Visit https://clinicaltrials.gov and search “NCT03185702”. Email questions to TSRegistry@uth.tmc.edu
- 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