Information for Researchers

“Registries for Rare Diseases: Involve the Patient” Originally published on Medscape Rare Diseases as part of the NORD and Medscape Editorial Collaboration.

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. Registry questionnaires cover the following topics:

If you would like access to The APS Type 1 (APECED) Registry data for a research project, please contact our registry administrator at Access to The APS Type 1 (APECED) Registry data is contingent upon project approval by The APS Type 1 Foundation Inc. and its registry advisory committee.