In 2019, the Foundation launched its very own registry, making our community not only contributors to research, but actual research partners. Our hope is that researchers will look to our database as an important source of information that they cannot obtain elsewhere. Our data is a valuable asset.

At our 2017 Symposium, Board Member Robin Finch talked about the importance of developing our own APS Type 1 Registry.

How It Works

The APS Type 1 (APECED) Registry is a secure database that provides a way to collect information from many different people with APS Type 1 and to update information over time as conditions and experiences change. Patients or their legally authorized representatives can enter important patient data into the database by completing different online surveys. These surveys can be completed at your own pace. You can start and stop by saving your progress.

About the Surveys

The surveys are intended to gather information about many different aspects of APS Type 1, including details about diagnosis, prognosis, treatments, which disorders the patient has and when they were acquired, medications, hospitalizations and quality of life. There are some general surveys as well that will collect profile and socio-demographic information.

As the registry develops, we plan to add additional surveys to meet the needs of our research community and to respond to the data collected.  All information will remain private and will not be linked to your name or any other identifiers. Researchers will have access only to de-identified data after review and approval by our registry advisory committee.

Next Steps

We hope that information collected in this registry will help researchers better understand APS Type 1 and be able to better diagnose and treat the conditions caused by APS Type 1.