Information for Researchers

The GSAPR 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. Registry questionnaires were built from common data element standards and cover the following topics:

If you would like access to the GSAPR data for a research project, please contact our registry administrator at  Access to the GSAPR data is contingent upon project approval by the GSAPR Advisory Committee.