“Registries for Rare Diseases: Involve the Patient” http://www.medscape.com/
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 firstname.lastname@example.org. 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.