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
- Misdiagnosis
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.
