Strategic partnering
Advancing Research.
Strengthening Community.
Improving Lives.
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 and interventions.
advancing innovative research
What is NASCARR?
The Network for Advancing Sex Chromosome Aneuploidy Research Readiness (NASCARR) is a national consortium of rare disease experts across the United States working together to improve the lives of individuals with sex chromosome aneuploidies, including Turner syndrome.
NASCARR brings together:
- Individuals and families
- Patient advocacy organizations
- Scientists
- Health care providers
- Clinical researchers
Together, we advance innovative research, expand clinical expertise, and strengthen education through collaboration and shared knowledge.
NASCARR provides funding to expand the InsighTS Registry
The InsighTS Registry is a secure, patient-powered research database designed to better understand Turner syndrome across the lifespan.
Because Turner syndrome affects each person differently — from cardiac health and growth patterns to fertility, endocrine function, hearing, and neurocognitive development — collecting real-world patient data is essential.
The registry helps researchers:
- Understand the full spectrum of Turner syndrome
- Identify unmet medical needs
- Track long-term health outcomes
- Improve standards of care
- Design better clinical trials
- Most importantly, it ensures that patient experience drives research priorities.
How Is NASCARR Connected to National Research Efforts?
NASCARR aligns with the mission of the NIH Rare Diseases Clinical Research Network (RDCRN), funded by the National Institutes of Health (NIH).
The RDCRN was created to:
- Advance rare disease research
- Support collaboration among expert academic centers
- Partner directly with patient advocacy groups
- Train future rare disease investigators
- Accelerate therapy development
Patient registries like InsighTS Registry are critical to this national infrastructure. They provide the real-world data necessary to move discoveries from the lab into meaningful clinical solutions that impact patients.
How Is NASCARR Connected to National Research Efforts?
It gives our community a stronger voice.
By participating, individuals with Turner syndrome directly shape the research agenda.
It builds the evidence base.
Turner syndrome is lifelong and complex. Registry data helps clarify health risks, variability, and best practices for care.
It accelerates clinical trials.
Researchers can design smarter, more efficient studies when they understand the real-world patient population.
It strengthens advocacy.
Registry data helps advocacy organizations demonstrate unmet need, influence policy, and secure research funding.
It improves care nationwide.
Insights from the registry help inform clinical guidelines and increase provider awareness.
How can you support the NASCARR research project for TS?
- Share medical history and health information through the InsighTS Registry
- Provide updates over time
- Consent to be contacted about future research opportunities
All information is stored securely and used according to strict privacy protections. Data is de-identified before being shared for research purposes.
The Bigger Picture
Turner syndrome affects approximately 1 in 2,000 live female births, yet gaps in research and long-term outcomes remain.
Through NASCARR, our community is building the foundation for:
- Earlier diagnosis
- More personalized care
- Improved health outcomes
- Future therapeutic advances
- When individuals and families participate in research, they transform possibility into progress.
