Ectodermal Dysplasias Registry

The Ectodermal Dysplasias Registry collects syndrome-specific natural history data about individuals with ectodermal dysplasias in the United States and Canada, with the goal of improving the understanding of ectodermal dysplasias and informing treatment development.

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

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Clinical trial participation

We are interested in sharing our data with you! If you would like access to the Ectodermal Dysplasias Registry data for a research project, please contact our Registry administrator at registry@nfed.org or 618-566-6872 for more information. Access to Ectodermal Dysplasias Registry data is contingent upon project approval by the Ectodermal Dysplasias Registry Advisory Board.