LeukoDataBase - LEUKOTREAT, therapeutic strategies for leukodystrophy affected patients

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Therapeutic strategies for leukodystrophy affected patients - LEUKOTREAT (Home)
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04/12/2013

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Home LeukoDataBase & Ethics The LeukoDataBase

The LeukoDataBase

The LeukoDataBase (or LeukoDB) was developed during LeukoTreat, aiming to be the reference European database on leukodystrophies. Now managed jointly by ELA and Soluscience, this information system dedicated to data collection of leukodystrophy patients throughout Europe is centralising for the first time at European scale three categories of information, for each patient affected with leukodystrophy:

  • Clinical data, through the Leukoclinical database, which aims at generating information on patients’ clinical data with the objective of efficiently setting up future therapeutic trials,
  • Biological Samples, through the Leukobiobank, aiming at collecting and safely storing all biological samples for leukodystrophy patients included in the Leukoclinical database,
  • Mutation data, through the Leukomutation database, which aims at gathering all mutations collected through the Universal Mutation Database system, for each gene already known to be implicated in leukodystrophies.

 

The LeukoDatabase currently represents the largest database on leukodystrophy patients with:

  • Clinical data collected for a total of 252 patients (in total 849 different clinical data),
  • Biobank sample data of patients collected for a total of 862 patients (in total 2374 samples),
  • 872 mutations recorded.

This will allow for a better understanding of leukodystrophies, especially through the establishment of much quicker and easier correlations between patients' data.

 

An information leaflet to be downloaded (in English or in French) presents the LeukoDatabase to patients and families. It explains how patients and their families’ rights are protected when participating to the LeukoDatabase.