What is a Patient Registry?
A patient registry is an online data system that systematically collects, stores, and retrieves patient data for analysis in research studies. The APBDRF Registry serves to:
What types of data will be collected in the Power of Patients Registry? Is the data secure?
The APBDRF FAN/NHS Registry collects data on the following topics:
The APBDRF FAN/NHS Registry follows strict government guidelines to assure patient information is protected. The registry platform is served over HTTPS, providing encryption of traffic to prevent eavesdropping and man-in-the-middle attacks. Communication between the registry platform application server and the database are also encrypted.
The APBD Research Foundation is participating in this registry with the National Organization Rare Diseases and nineteen other rare diseases to study the impact of the disease over a period of years. The study will collect health information over time in order to understand how the disease develops and to give insight into how it might be treated. The study can be submitted to the FDA or another regulatory agency as a baseline to show the agency the disease course for untreated patients. The natural history data is compared to the disease course of patients given the proposed therapy to show how the natural progress is changed or perhaps halted by the therapy. Participation of APBD patients is critical to obtaining disease information over a period of time to provide data on the effectiveness of a treatment.