Information for Researchers

The Undiagnosed Rare Disease Registry collects disease-specific natural history data about individuals with rare disorders, with the goal of improving the understanding of rare disorders and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

If you would like access to data collected in the Undiagnosed Registry for a research project, please contact our registry administrator at Access to Undiagnosed Registry data is contingent upon project approval by the NORD undiagnosed rare disease registry advisory board.