Thank you for your interest in the APS Type 1 (APECED) Registry.

The APS Type 1 (APECED) Registry collects disease-specific natural history data about individuals with APS Type 1/APECED, with the goal of improving the understanding of the rare disorder and informing treatment development.

Data Collection

Existing registry questionnaires cover the following topics:

  • Diagnostic Information
  • Demographics
  • Medical History
  • Treatment, including Medication
  • Review of Systems
  • Quality of Life
  • Interest in Clinical Trial Participation

Work With Us

We are interested in working with researchers and are prepared to make de-identified data available to promote research into this rare disorder. If you would like access to The APS Type 1 (APECED) Registry data for a research project or if you have particular research questions you want answered, please contact our registry administrator at registry@apstype1.org.

Access to The APS Type 1 (APECED) Registry data is contingent upon receipt of project approval from The APS Type 1 Foundation Inc. and its registry advisory committee. Learn more in our Registry FAQs.

The amazing group at the 2017 Symposium in Stony Brook, NY.