A Global Registry to Increase Research & Improve Care
TSRX stands for Turner Syndrome Research eXchange Turner Syndrome Foundation’s Patient Insights Network (PIN) in collaboration with Invitae – the Turner Syndrome Research eXchange (TSRX)! We invite all Turner syndrome patients to provide medical information to the PIN to help the global community – patients, families, researchers, clinicians, and pharmaceutical companies – learn more about Turner syndrome. The goal is improved diagnosis and medical care, as well as empowerment of patients and families through knowledge, connections, and support.
When you join the Turner Syndrome Research eXchange you’ll be helping researchers gain a deeper understanding of Turner syndrome. Patients’ experiences with Turner syndrome can provide vital insight into the treatments, care options, and progression of Turner syndrome. For a complex condition like Turner syndrome, the patient’s voice is a crucial part of research.
Once enrolled, patients and their caregivers are guided through a series of questions to gather information on diagnosis, genetic information, treatment, and any other relevant health data. Participants who choose to join TSRX own all of their data. All data will be safeguarded and de-identified, meaning it doesn’t contain your name, date of birth, or other identifying data to maintain your privacy. Participants control how their information is shared and can choose to opt out at any time. Since data is stored online, patients can log in and update their data in real time from anywhere.
Storing data in one place has many benefits, particularly for patients. Patients and caregivers are able to learn how others are managing their Turner syndrome journey by exploring de-identified data submitted by others. Participants can also opt in to receive information about research opportunities and clinical trials that match their responses. Joining the TSRX can help patients understand their own health while contributing to important research. In addition, PINs help pharmaceutical companies find better treatments faster and help advocacy organizations, like TSF, better understand the needs of the community they serve.
Why Invitae? Invitae has a current database of more than 75,000 patients representing more than 400 diseases. They are also working with more than 100 advocacy organizations, established national researchers, clinicians, and more. Invitae understands the importance of connecting all of these groups in order to accelerate the understanding of conditions like Turner syndrome, with the patient at the center of it all.
Your information can influence the global Turner syndrome community. We invite you to join today and be a part of the solution.
Help us register every patient!