When it comes to rare conditions like Schaaf-Yang syndrome (SYS), every story has value. Each symptom, milestone, and lived experience helps deepen our understanding of SYS and strengthens the foundation for better care, support, and future treatments.
That’s where the SYS Registry comes in.
What Is the SYS Registry?
The SYS Registry is a secure, online platform designed to collect meaningful information from families about their loved one’s experiences with SYS. It captures a wide range of details—from medical history and developmental progress to daily routines, therapies, and behavior patterns.
Researchers, clinicians, and industry partners rely on this information to answer key questions and build a clearer picture of SYS across all ages and symptom presentations.
Why the Registry Matters
The value of the SYS Registry goes far beyond data collection. It has become a critical resource that:
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Advances research: Real-world experiences help scientists identify patterns, better understand symptoms, and explore new paths toward targeted treatments.
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Informs priorities: Insights from families helped shape the new SYS severity score, ensuring research focuses on the challenges that matter most to the community.
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Supports therapy development: Registry data helps clinicians and pharmaceutical partners understand how treatments—such as VYKAT—are being used and where improvements are needed.
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Connects the community: The Registry brings together families from around the world who are contributing to a shared understanding of SYS.
A Resource for Families, Too
One of the most helpful features of the Registry is the ability to view community-wide data in real time. As information is added, families can see emerging trends, compare experiences, and gain insights that might support everyday decision-making.
Keeping the Registry Strong
The Registry continues to grow and evolve as families update profiles and complete new surveys over time. These ongoing updates help ensure the information reflects the full SYS experience—across ages, stages, and lived realities.
Every detail helps build a clearer, more accurate picture of SYS. The stories shared today strengthen the knowledge that will guide care, research, and support for years to come.
Your voice matters. Your story matters. Together, we can make a difference in the future of SYS care and research.
Learn more and join the Registry today: www.pwsregistry.org
