UK National EHE Biobank goes live!

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20 April 2021

We are delighted to confirm that the UK National EHE Biobank has gone live and is open to recruit EHE patients who want to contribute their samples to support future EHE research. Kate Hooper, Trustee of the Charity said:

This is so important as accessing bio samples is critical for research but so difficult for ultra-rare cancers. The Biobank will now be collecting both tissue samples and fluid samples from participating EHE patients. But this is a personal choice for every patient. There is no pressure for patients to join, and if a patient decides not to participate, it will make no difference to the treatment and care they receive. It is really their choice.

If patients in the UK want to participate, then they can find more details on the EHERCC website at  where they will find further explanations of what is involved, how the biobank works, and why it is important. There is also a Patient Information Sheet and a Patient Consent Form, both of which can be downloaded for those who want to join.

Hugh Leonard wanted to be clear that participation in the biobank was open to everybody in the UK, regardless of location:

This is a national UK-wide biobank so patients can ask for their samples to be included wherever they live in the UK. Patients can achieve this by either asking their hospital and doctors to enrol them and send the samples, or they can enrol directly with the Royal Marsden team and they will then contact the patient’s hospital. Patients will just need to provide their consent. Patients will also be able to give blood samples at their local hospital and these will be sent to the Marsden.”

We hope that blood samples can be collected from participating patients every time they have a consultation. The biobank also want to collect samples from diagnostic biopsies, as well as from surgery to remove tumours during treatment. There may in some cases be other fluid samples that would be useful to collect. So even if patients are on ‘wait-and-watch’, there are important contributions that they can make.

If any UK patients are interested and want to know more, or have any questions, then please contact the Tissue Manager (Emma Perkins) at the Royal Marsden Hospital. You can also contact Hugh Leonard by email at at the EHE Rare Cancer Charity.

We want to thank the Royal Marsden Hospital who have been instrumental in helping set the biobank up, and who are managing and storing the samples at the Royal Marsden Generic Tissue Bank. We also want to thank the ICR who have also been involved. We could not be more grateful for their brilliant support.


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