EURenOmics is a European funded research project, focused on the following 5 groups of kidney diseases:
- Steroid resistant nephrotic syndrome
- Membranous nephropathy
- Complement disorders such a haemolytic uraemic syndrome
- Congenital kidney malformations
FEDERG is participating to this project as member of the Ethical Committee.
Why FEDERG is active in EURenOmics?
The answer, is similar to that for RD-Connect and is double. We are directly concerned by the research components of the EURenOmics project. The five renal pathologies concerned are partly or totally of genetic origin. Raising our capacity and legitimacy is the second objective. FEDERG is now well recognized as the European patient organisation for IKD. In fact we are now regularly called to be part of consortium that applies for research funding at European level (Horizon 2020).
In concrete terms can you give us an example of how FEDERG is active in EURenOmics?
An important obstacle that has been discussed during the second year of the project was the use of historical bio samples for which the initial consent does not include international exchanges. The arrival of a new generation of technical tools in genetic and bio-informatics opens new large avenue for research on diagnosis, prognosis and treatment. The possibility of investigating again historical bio-samples in parallel with the clinical history of patients is extremely promising. It is especially the case of the samples of renal biopsy. This biopsy is no longer performed, thus the existing samples are of high values. The difficulty sometimes is to retrieve track of the patient to get a new informed consent allowing these new types of investigation and the international exchange of materials. Through the ethical committee we, as FEDERG, try to favour efficiency and overcome the legal hurdles preventing from using these historical samples. The issue is still debated and no easy solution is found.
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