One of the problems with ultra-rare cancers is that tumour tissue is very scarce, and this in turn has a hugely negative impact on research possibilities. For this reason all three of the EHE foundations are working with organisations in their respective countries to try and capture EHE tissue and fluid samples wherever they can.
In August 2019 The EHE Rare Cancer Charity (EHERCC) initiated a project with the Institute of Cancer Research (ICR) in London, sister organisation to the Royal Marsden Hospital (RMH), to establish a UK national EHE biobank. The project has involved the recruitment and funding of a full time Tissue Manager who has been working to pull together all the processes, procedures and documentation required before ethics approval can be obtained and the biobank launched.
At the end of March, Hugh Leonard of the EHERCC, took part in a videoconference with the ICR team to obtain an update on progress. “Things have progressed so well” said Hugh. “They have done a great job preparing all procedures and documents which are now in place. The RMH have also been very helpful, agreeing that the actual biobank sampling and storage procedures will be undertaken by the RMH Generic Tissue Bank (GTB), who already run and administer biobanks for several other cancers.”
The team are now ready to move forward with the ethics approval which will be the last stage of the set up procedures before the biobank goes live. After this the EHERCC and the ICR will be working together to publicise the biobank and encourage participation of all EHE patients and hospitals in the UK. “This is exciting” commented Hugh. “Tissue and fluid collection is so important to assist with EHE research. Up until now it has been a rather haphazard process with individual patients and the charity working with hospitals on a case by case basis to try and save samples for future research. With this fully-approved EHE national biobank open to the whole UK, and with an accepted sampling programme for each patient, we hope that tissue and fluid sampling and capture will become coordinated, planned and very effective”.
The EHERCC is now working with the biobank team to assist with the completion of the biobank set up and the subsequent publicity of its launch. And that won’t be the end. Hugh explained “our initial focus is on the UK national process and getting this up and running. But once we have achieved that, we will be reaching out to our European partners to try and develop a European-wide EHE biobank process. We are also considering ways to possibly expand the biobank to include other rare cancers. This will be great for the overall treatment of rare cancers, but will also allow us to share costs with other groups. But our initial focus is simply to get the biobank working efficiently for EHE patients.”