DSEF finds it very important to collect data in a proper, easy and ethical way, so that scientists and other stakeholders can learn from it, work on better understanding and better treatments. Therefore DSEF decided to support the international registry PLATFORM RESIDRAS.
RESIDRAS – international Registry of Dravet Syndrome and other Syndromes related to mutation on SCN1A and PCDH19 genes – is a project of the Associazione Dravet Italia Onlus, established in Verona in 2010 with the specific aim of sustaining scientific research into Dravet Syndrome, drawing upon the work of the associations Scientific Medical Committee.
The Syndrome includes a spectrum of conditions with a variable degree of severity, in which patients show all or only some of the clinical characteristics as described in Dravet Syndrome. The Register is an essential instrument used to improve knowledge of the disease through the collection and systematic registration, with a constant flow of clinical data of patients with Dravet Syndrome.
In July 2018 PLATFORM RESIDRAS included 24 expertise centers (hospitals and clinics) all over Europe, and a total of 272 registered patients with Dravet Syndrome.