Latest News & Articles

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The potentials of a novel add-on therapy for PDE

Lysine restriction has been shown by a proof-principle-study to reduce neurotoxic metabolites and improve, seizure control, behavior and/or psychomotor development….More »

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PDE diet application to be launched in early 2014

The new application is promised by the pdeonline.org to be launched soon. It will help to support patients, caregivers and…More »

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PDE Diet Research Database to be launched in 2014 by pdeonline.org

The database will be accessible online via the Research Electronic Data Capture (REDCap) system which provides functionality and features to…More »

Helpful Resources and Information

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.