Biobanks map

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):

  • Galliera Genetic Biobank,  Genoa Italy – Partner 1 of the Telethon Network of Genetic Biobanks (TNGB). The collection was established in 2012 thanks to the formalisation of a working partnership via a written agreement between the Gruppo Famiglie Dravet, Milan IT  and the Telethon Network of Genetic Biobanks, member of Eurobiobank and RDConnect. At present, 64 samples (DNA, Lymphoblasts and PBMCs) from subjects with Dravet and their parents (16 trios) have been collected within the above mentioned agreement. The sample catalogue is publicly available. Extensive clinical data are available for most samples. For more info contact gruppofamiglie@sindromedidravet.org.
  • INGEMM biobank. Dravet Syndrome Foundation has been driving a genetic test for Dravet free or charge for five years. Because of this genetic test program we collected blood samples for hundreds of patients. These samples are stored at Hospital La Paz from Madrid and they can be asked to the medical team for research purposed. To have more information about this biobank and how to get access to samples please contact testdravet@dravetfoundation.eu.

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