PATIENT REGISTRY
InsighTS — the registry powering TS research.
The InsighTS Registry is a free, secure, longitudinal health registry for people with Turner syndrome of all ages. Your data helps researchers understand TS across the lifespan — and drives the next generation of treatments.
✦ 900+ Enrolled
Why InsighTS Matters
Longitudinal Data
Participants contribute health data over years and decades — giving researchers a rare window into how Turner syndrome evolves across the lifespan.
Genetic Research
InsighTS captures data across all karyotype variants, monosomy X, mosaics, and structural X, enabling research that reflects the true spectrum of TS.
Community-Driven
Every participant is a partner in research. InsighTS is built with and for the TS community — your voice shapes what gets studied.
InsighTS FAQs
What is the InsighTS Registry?
TSGA has been working with a team of Clinic Directors to develop a multi-institutional, collaborative research registry to collect patient data that will allow us to learn more about TS. The INSIGHTS Registry will collect patient data from multiple Clinics in a shared format, allowing the data to be pooled and used to drive new and exciting research on TS. This Registry has the potential to collect more clinical data on Turner syndrome than ever before, creating interest in research and opportunities to fund research.
How can you participate in the InsighTS Registry?
TSGA has been working with a team of Clinic Directors to develop a multi-institutional, collaborative research registry to collect patient data that will allow us to learn more about TS. The INSIGHTS Registry will collect patient data from multiple Clinics in a shared format, allowing the data to be pooled and used to drive new and exciting research on TS. This Registry has the potential to collect more clinical data on Turner syndrome than ever before, creating interest in research and opportunities to fund research.
Who can participate in InsighTS?
Current and past patients of these Turner Syndrome Clinics may be eligible to participate:
- Children’s Hospital Colorado
- Ann & Robert H. Lurie Children’s Hospital of Chicago
- University of North Carolina at Chapel Hill
- Children’s Hospital of Philadelphia
- University of Texas Health Science Center at Houston Adult Clinic
- Children’s National
- Cincinnati Children’s Hospital Medical Center
- Seattle Children’s
- University of Iowa Stead Family Children’s Hospital
- UCSD Rady Children’s Hospital
- Nationwide Children’s
Why is a Turner Syndrome registry important to the ts community?
At its simplest definition “a patient registry is a collection—for one or more purposes—of standardized information about a group of patients who share a condition or experience.” (source: https://www.ncbi.nlm.nih.gov/books/NBK164513/)
Why is it important to capture a large amount of clinical data?
For example, if a researcher wants to study the occurrence and treatment of ear infections in girls with TS to see if there is a correlation to hearing loss, the more data she can access, the better the study outcomes will represent the reality of ear infections and hearing loss in the TS community. The INSIGHTS Registry is built to be collaborative and multi-institutional. If the six initial clinics each enter data on 50 patients, there will be clinical data for 300 patients:
Without the INSIGHTS Registry, a researcher could create and implement a study at Clinic #1 and have (in this example) patient data from 50 individuals. With the INSIGHTS Registry, this same researcher, could access all the ear and hearing data for 300 patients. Over the first 3 years, as the INSIGHTS Registry rolls out to other Clinic sites, the potential patient enrollment is over 1500 patients. The value of the research data cannot be overstated.
A benefit of the INSIGHTS Registry enrolling through the TSGA network of Clinics is that the clinics provide a pathway to integrate new findings into care. As data from the registry indicates new strategies, the Clinics are positioned to adjust systems of care to take advantage of new information.
When you enroll in the INSIGHTS Registry, you will be informed of privacy policies. Each Clinic that enrolls patients in the registry will have the process approved by their Institutional Review Board (IRB). This helps to ensure that patients rights and privacy are protected. Feel free to ask questions about how the registry protects your patient information at the time of enrollment.
HOW IT WORKS
Enrolling takes under 30 minutes.
Enrollment is free, secure, and open to anyone with a Turner syndrome diagnosis — regardless of age, karyotype, or location. You can update your information at any time, and you control what you share.
Create your secure account
Verify your identify through a short intake form. Your information is encrypted and never shared without your permission.
Complete the baseline questionnaire
Share your or your loved one's diagnosis details, medical history, and current care. It takes about 20 minutes.
Check back yearly
Once a year, we'll invite you to update your record so researchers can track meaningful changes over time.
See the research you've shaped
Participants receive plain-language summaries of studies that use InsighTS data, so you can see the impact of your contribution.
JOIN THE REGISTRY
Add your story to InsighTS.
Every person who enrolls makes the registry more powerful. The more data we have, the better the science — and the better the care for everyone with Turner syndrome.
