Global Schaaf-Yang Syndrome Registry
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with a request body that specifies how to map the columns of your import file to the associated CRM properties in HubSpot.... In the request JSON, define the import file details, including mapping the spreadsheet's columns to HubSpot data. Your request JSON should include the following fields:... entry for each column.
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with a request body that specifies how to map the columns of your import file to the associated CRM properties in HubSpot.... In the request JSON, define the import file details, including mapping the spreadsheet's columns to HubSpot data. Your request JSON should include the following fields:... entry for each column.
Established in 2025 by FPWR, in collaboration with international Schaaf-Yang syndrome (SYS) experts and community stakeholders, the Global SYS Registry is a longitudinal natural-history registry designed to advance research and accelerate therapeutic development. The SYS Registry supports researchers by providing comprehensive real-world data on individuals with SYS, facilitating clinical trial recruitment, and identifying unmet research and treatment needs.
Hosted on the National Organization for Rare Disorders (NORD) Registry Platform, the Global SYS Registry is designed to advance understanding of SYS and support the future of the SYS community. The registry helps researchers better understand how SYS changes over a person’s lifetime, supports the design and development of clinical trials exploring new treatments for SYS, and provides valuable information that can help guide future research and care.
Registry Data and Longitudinal Follow-Up
The Registry collects comprehensive caregiver-reported data across the lifespan, including:
- Demographics and contact information
- Diagnosis
- Sleep history
- Orthopedic history
Participants are encouraged to update their medical information annually, creating a longitudinal dataset that helps researchers understand how SYS affects individuals over time, identify changes in health and development, and evaluate treatment patterns.
Data Access and Governance
De-identified, aggregated data from the Registry is available to academic and industry collaborators conducting retrospective studies or conducting and/or clinical trials on new therapies. Third parties are granted access to de-identified data according to the guidelines of the Global SYS Registry Advisory Board, and an independent IRB provides ethical oversight for Registry activities. Third parties seeking to recruit participants for research studies through the SYS Registry must demonstrate evidence of IRB approval of the research study that will be recruited.
For More Information
For more information, email Jessica Bohonowych, Ph.D., Associate Director of Research Programs.