APS Type 1 (APECED)

The APS Type 1 (APECED) Registry collects disease-specific natural history data about individuals with APS Type 1, with the goal of improving the understanding of APS Type 1 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 APS Type 1 (APECED) Registry data for a research project, please contact our registry administrator at registry@apstype1.org for more information. Access to the APS Type 1 (APECED) Registry data is contingent upon project approval by the APS Type 1 (APECED) Registry Advisory Board.