Ethics - LEUKOTREAT, therapeutic strategies for leukodystrophy affected patients

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04/12/2013

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All documents prepared by the Ethics Research Group during LeukoTreat ...
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Last update : 09/02/2015

Home LeukoDataBase & Ethics Ethics in LeukoTreat

Ethics in LeukoTreat

During LeukoTreat, two main entities worked closely together regarding ethic issues:

  • The LeukoTreat Ethics Research Group, a university team composed of researchers (biologists, physicans and jurists) specialised in practices evaluation in research and care so as to promote ethical recommendations and tools,
  • The LeukoTreat Ethics Committee, including independent experts in medical ethics, human sciences, law professionals and representatives of patients' associations.

Indeed, as one central objective of LeukoTreat was to collect information/data necessary for future therapeutic trials on the epidemiology, the natural history, the genotype/phenotype correlation of leukodystrophies (through the LeukoDataBase), ethical issues were raised regarding data collection, storage, patient’s information and consent.

 

Therefore, the Ethics Research Group, with strong support and final validation from the Ethics Committee, prepared during LeukoTreat a number of specific documents related to Information and Consent of patients and their families. These documents are all free to download.

 

For more details on Ethics in LeukoTreat, download the LeukoTreat Ethics Report below: