Leuko DataBase & Ethics - 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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LeukoDataBase & Ethics

One central objective of LeukoTreat was to collect all information necessary for future therapeutic trials on the epidemiology, the natural history, the genotype/phenotype correlation of leukodystrophies, for a sufficient number of patients. To reach this goal, the LeukoDataBase (or LeukoDB) was developed during LeukoTreat, with the aim to be the reference European database on leukodystrophies.

 

Through the integration of the three existing databases (in France, Italy and Germany), the European LeukoDB thus emerged and is now managed jointly by ELA and Soluscience. Work performed led to the following results:

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

In this context of data collection, ethics held a central place in LeukoTreat. Ethical issues were therefore fully investigated to promote best practices, produce innovative guidelines and enhance communication with the patients and their families. In particular, experts in ethics and LD patient’s associations worked closely with the research teams for the protection of LD patient’s rights and a better understanding of the patients’ needs.