Research is a team effort. The more people that are on the team, the more effective research can be. It is important for all women, girls, and family members affected by Turner Syndrome to contribute to clinical trials in order to provide researchers with a clear picture of the cause, impact, and treatments of TS.
Below we’re sharing two research opportunities that are directly connected to the larger medical community. There’s power in numbers. Increase visibility and research interest of Turner Syndrome when you choose to contribute today.
The Turner Syndrome Research eXchange (TSRX) is a patient-centered research registry, or Patient Insights Network (PIN). A PIN is an online platform where individuals can take surveys, upload medical records, track health outcomes, and learn about the latest research. A PIN is different from a traditional research registry because participates own 100% of their data. You choose whether you’d like to share your data with the medical community or not. In addition, all identifying information is removed from the data to protect your identity.
Why Are the Benefits of Joining?
When you contribute to the TSRX, you are contributing to the global Turner Syndrome community. With your permission, your de-identified data is shared with researchers and medical investigators. The more researchers know about TS, the sooner they will be able to find answers. Help researchers help you.
Your information can also be shared with pharmaceutical and biomedical companies. When these companies understand TS and how many people are affected, they are more likely to invest in corresponding research studies. Overall, the TSRX can generate research interest to influence the future of TS care and treatment options. Make sure your experience is a part of the story.
The TSRX offers immediate benefits to you, too! After taking a survey, you can see how your responses compare to the de-identified data of other participants. You’ll be able to see how others with TS are managing their health in real-time. You can also opt in to receive information about research opportunities and clinical trials that match your responses.
How Do I Join?
NIGMS Human Genetic Cell Repository
The National Institute of General Medical Sciences Human Genetic Cell Repository was established in 1972 by Coriell Institute for Medical Research. The Repository contains more than 11,700 cell lines and represents a variety of disease states and chromosomal abnormalities.
A cell repository stores cell lines for use in research. To make a cell line, human cells are taken from a blood or tissue sample and placed in a container with a growth solution in a process called cell culturing. Cultured cells can then be harvested, frozen, and stored. Scientists can access banked cells and use them for a variety of purposes, including: finding new genes, studying how cells function, and developing new ways to diagnose, treat and possibly prevent genetic diseases.
Why Should You Contribute?
The lack of availability of human cell and tissue resources for scientists is a major barrier in finding treatments for genetic diseases. When you donate a sample, you make it possible for scientists across the globe to learn more about genetic diseases. Testing candidate drugs or therapies using donated cells can help scientists determine which approaches are most likely to work and be safe enough to test further in human clinical trials.
Like the TSRX, your privacy is taken seriously. Identifying information is removed from samples and replaced with a code number. At any time, you can ask that your samples be withdrawn.
How Do I Join?
To donate either a blood or biopsy (skin tissue) sample to the NIGMS Repository, you or your child must have an inherited genetic disease or chromosomal abnormality. Contact Tara Schmidlen, MS, CGC at 856-757-4822 or firstname.lastname@example.org to inquire about eligibility and state that you would like a collection kit sent to you. Read more about the Repository.