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The database will be accessible online via the Research Electronic Data Capture (REDCap) system which provides functionality and features to…More »
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What is the PDE registry?
The goal of the PDE registry maintained by the PDE Consortium (https://neurodevnet.med.ualberta.ca/surveys/?s=s4jcLJ) is to map out all PDE patients and form the basis for future research endeavors. It's an online registry database powered by REDCap software. Data is entered in de-identified fashion. It's set up in such a way that it's easy to use and won't take much of your time (10 minutes per patient). The goal is to stimulate wwwp for affected patients worldwide, through the diet study and other research endeavors. So, how do we ‘get there’? As is the case in all Rare-Disease research, the answer is in the numbers. We need tools and strategies to get more patients and committed health care professionals involved. Implementation of novel trial methodologies for small patient numbers is another key to success. The PDE Registry forms the basis; we need to map out our patients and colleagues interested in improving outcomes for this metabolic epilepsy. Read more on the registry. To enter the patient into the PDE Registry, use the link below...Access PDE Registry.
|Join the PDE Consortium|
|Clinical Trial for Lysine-Restricted Diet: Neurodevelopmental Outcome of Early Dietary Lysine Restriction in Pyridoxine Dependent Epilepsy Patients|