When it comes to rare conditions like Schaaf-Yang syndrome (SYS), every story matters. Every symptom, every milestone, every experience can help researchers, clinicians, and pharmaceutical companies understand the condition better and ultimately improve care and treatment for children and adults living with SYS.
That’s where the SYS Registry comes in.
The SYS Registry is a secure, online platform where families can share detailed information about their loved one’s experiences with SYS. From medical history to daily routines, from therapies to behavior patterns, the Registry collects data that scientists use to answer important research questions.
You might wonder, “Does filling out a survey really help?” The answer is a resounding yes. Here’s why your input is so powerful:
Drives research forward: Every piece of information helps researchers identify patterns, study symptoms, and develop new treatments.
Shapes priorities: Families’ voices help determine which aspects of SYS are most important to study. Recently, the Registry data contributed to creating an SYS severity score that reflects the challenges families care about most.
Supports therapy development: Real-world experiences help pharmaceutical companies and clinicians understand how treatments like VYKAT are being used, what’s working, and where there’s room for improvement.
Creates a global community: When families share their experiences, they become part of a worldwide effort to advance SYS knowledge and care.
One of the unique features of the Registry is that it allows you to see real-time, community-wide data. By filling out surveys, you’re not just contributing to research—you can also learn from other families’ experiences, find trends, and gain insights that might help in daily life.
Whether you’re new to the Registry or have been part of it for years, your participation matters. Updating profiles, completing surveys, and sharing new experiences ensures researchers have the most complete and accurate data possible.
Every update, no matter how small, helps move SYS research forward. By participating, you’re turning your family’s lived experience into knowledge that can change lives—not just today, but for generations 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