The terms biobank or biorepository refer to a structured collection of biological samples stored for the purposes of present and future researches. The biobank operates according to ethical, legal and quality standards with the aim to collect, process, store and distribute human biological material (DNA/RNA, cell lines, blood, serum/plasma and tissues) and associated data.
Since the late 1990s, biobanks have become a key resource for the biomedical community by supporting basic clinical research activities as well as translational and personalized medicine.
In this context, the genetic biobanks represent a fundamental tool for researchers dealing with rare genetic diseases in order to:
(i) underlie disease mechanisms;
(ii) develop new diagnostic techniques and
(iii) identify new potential therapeutic targets.
Considering the above, the set up of organized and centralized collections of biological human samples and associated data from persons suffering from Dravet Syndrome, and their families, is an important goal to achieve.
Currently, the following collections have been established by two association members of The Dravet Syndrome European Federation (DSEF):