Connecting Canadian Families and Researchers with Gorlin Syndrome Data

GSA contributed to a new resource from RareKids-CAN, a Canadian initiative advancing clinical trial readiness and treatment opportunities for children with rare diseases.

Its Inventory of Rare Disease Registries helps families, clinicians, and researchers find registries that include Canadian and pediatric participants, with information about enrollment, recruitment, and research data access.

GSA shared information about our Natural History Study, including its data dictionary, and our experience developing and managing a rare disease registry. This collaboration increases the study’s visibility among Canadian families and researchers while sharing practical knowledge that can support other registry programs.

Thank you to RareKids-CAN for including Gorlin syndrome in this effort to strengthen connections across rare disease research.