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Genetic therapy / coloscopy of the large bowel (organoids)

Question
Dear experts,
in facebook, many parents from Russia want to have a test done at the CF Center in Leuven, Belgium (coloscopy of the large bowel) in order to know, whicht gene technique is suitable for their child with CF. How realistic is that? It should not cost anything. Do you have any further information?
Many thanks
Answer
Dear questioner,
I assume that your question concerns the so-called "HIT-CF" project. In the frame of this project screening structures at three European centers (Utrecht, Lisboa and Leuven) should be built up so that substances can be tested on tissue samples (organoids) of patients with rare CFTR-mutations. After that, a clinical study for testing effective substances in patients is planned. Within this profect, a biobank should be built up with the aim to test the gained samples again at a later timepoint, if, for example other new substances are available.
You find the internet side under the follwoing link:
https://www.hitcf.org/for-patients/
You can conatct the participaiting centers directly and clarify, if your child could take part in this study.
Best regards,
Dr. med Christina Smaczny
15.02.2019