The EHE Rare Cancer Charity has been trying for over two years to establish an EHE biobank in the UK. This has proved to be frustratingly hard to achieve due to the limited resources available within the NHS. But following discussions with the Institute of Cancer Research and the Royal Marsden Hospital in London, the EHERCC was delighted to sign a two year funding arrangement with the Royal Marsden Cancer Charity to fund the role of a dedicated Tissue Manager in The Joint Royal Marsden-ICR Sarcoma Research Unit.
“We hope that this new role will allow us to progress with a number of key functions” said Hugh Leonard, Chair of Trustees at the EHERCC. “We want to establish a bio bank and sampling protocols to start to collect EHE tissue and blood samples from all UK patients. This is important as tissue availability is a key limitation in several areas of research. We hope by developing the biobank we will in the future be able to provide real and meaningful biological samples to interested researchers.”
The EHERCC will also be coordinating the collation of historic data for the up-coming EHE international retrospective study. “This will be the first major collation of international EHE patient data. A key part of that study will be accessing, collating and cataloguing the large number of historic data sets held across the UK. We hope that the new Tissue Manager can play a key role in this process.”
And these objectives are not restricted to the UK. Hugh Leonard explained “with such a rare disease we want ultimately to have a European-wide data catalogue with multiple centres contributing to the overall EHE data and sample sets.”