For Researchers

The Gorlin Syndrome Alliance Natural History Study (NHS) collects disease-specific natural history data about individuals with Gorlin syndrome, with the goal of improving the understanding of Gorlin syndrome and informing treatment development. The NHS surveys were built from common data element standards and cover the following topics:

• Social and demographic information
• Medical history and diagnostics
• Clinical manifestations
• Treatment and disease progression
• Care approach and management
• Quality of life

The NHS is rich with patient data available to qualified researchers, clinicians, and industry partners dedicated to advancing the understanding and treatment of Gorlin syndrome. To qualify and request access to this data, applicants must complete the NHS Data Request Form, which gathers key details about the proposed project, including its aims, feasibility, specific datasets requested, contact information and biosketch of the Principal Investigator, and IRB protocol documentation. All submissions are reviewed on a rolling basis by the NHS Advisory Committee to ensure scientific merit, ethical integrity, and alignment with the GSA’s mission. Applicants will receive confirmation of receipt within two weeks, and formal review outcomes are typically communicated within 4 – 6 weeks.