TSGA is committed to increasing research on Turner syndrome by working with individuals, families, medical providers, and researchers to create opportunities for evidence-based research to occur.
RESEARCH is the key to improving healthcare for girls and women with TS. Medical visits and decisions are a reality for individuals living with TS. In order to make informed decisions, we need to have good information. In order to interest researchers in TS, our community needs to be able to provide data and research participants.
What is TSGA doing to support RESEARCH?
TSGA is working with a group of medical providers through the network of TS Clinics to develop systems for entering and tracking health data for girls and women with TS. The patient or her family will always be asked for consent to include their data in the hospital system for research. By working with numerous clinics, we are developing a system where all data will be captured in the same way. This will eventually enable researchers to access data from multiple collection sites, giving them enough information to use to compile research studies. All research studies through hospitals go through a strict approval process to ensure that patient privacy is always maintained.
Also, in 2016, TSGA made two direct grants to Medical Fellows working on research projects. One project from Colorado will look at girls with TS and metabolism. The second project is out of North Carolina and is looking at immune response in Turner syndrome patients.
How can you support RESEARCH?
Understand, participate, and fund research for a better future.
UNDERSTAND RESEARCH: Stay educated on the latest TS information. In 2016, TSGA joined TSSUS and medical providers and researchers from the US and Europe to create new international guidelines for TS care. This document will be published in 2017 and all of the guidelines are based on the results of published research on TS. When it becomes available, be sure you read the guidelines and ask your doctor to also read them.
PARTICIPATE in RESEARCH: Always look for opportunities to for yourself or your child to participate in research for TS. Of course, you will need to learn about each research project to make sure it is a good fit for you, but be open to supporting research through participation. Everything we know about health care for TS today, we know because someone before us participated in research. Let’s ensure that we are continuing to build our knowledge base about TS for future generations.
One way to participate in research is to sign up for the Turner Syndrome Research Registry. This registry is a project of TSSUS and is the beginning of a patient powered database for research. This registry will work in parallel with the Clinic database to provide researchers with abundant information and incentive to learn more about TS. Here is a link to the registry: http://www.turnersyndrome.org/ts-registry-love?PEERREF=TSRR-A
FUND RESEARCH: The reality is that research takes money. Turner syndrome research has not been a priority and has not traditionally received government grants to further research. Since it is the patients and the families that are driving research, we must also be the ones to fund research. If you would like to support TSGA’s efforts to increase research, including our direct grants to research, you can make a financial contribution here: https://co.clickandpledge.com/sp/d1/default.aspx?wid=95670