UK National EHE Biobank

UK National EHE Biobank

Biobank Launched

The National EHE Biobank is funded by the EHERCC and is based at the Royal Marsden Hospital in London. Following two years to establish all necessary infrastructure, documentation and approvals the biobank went live in April 2021 and is continuing to collect tissue, blood and fluid samples from EHE patient who have registered with the Biobank.

Patient Message

If possible please support the collection of EHE samples by joining and supporting the UK National EHE Biobank.

Details about the biobank, introductory and explanatory documentation, the consent process, and contacts to get in touch can be found below, on this page.

It is very hard for us to over-emphasise the importance of collecting biological samples from our patient community. Blood samples from EHE patients have for example, been instrumental in our European collaboration project where strong EHE biomarker candidates have been identified. Without those blood samples, progress would not have been made.

While we have also seen significant success in the development of animal EHE models and cell lines over the past four years, we still only have one viable PDX mouse model of human EHE in the world. Fresh tissue samples from patients undergoing surgery are critical to the ongoing work to develop more such models of the disease. That is why patient registration and planning with the biobank is so critical. This is particularly important for patients who are facing surgery either to remove EHE tissue   or through a liver transplant.

Why is a biobank important?

Dealing with an ultra-rare cancer like EHE creates a lot of challenges. One key challenge is the very small number of patients diagnosed with the disease, and the resultant small amounts of EHE tissue and fluid samples that are available for research. But those small amounts of tissue and fluid samples will only be available for research if they are identified, captured, collected and carefully stored, together with the appropriate patient clinical records, and then made available to scientists who want to carry out the research.

​​To do this effectively it is essential that the collection and storage of samples in the UK is centrally organised, managed and administered. These centrally-coordinated collections of samples are known as biobanks, and for a disease like EHE, establishing one is critical to support meaningful research that will ultimately help find new way to treat the disease.

The National EHE Biobank (UK)

Funded by the EHE Rare Cancer Charity, the National EHE Biobank has been jointly created by the Institute of Cancer Research (ICR) and the Royal Marsden Hospital (RMH) in London. The actual biobank itself will be administered by the Royal Marsden Generic Tissue Bank (GTB) based at the Royal Marsden Hospital.

But we can only collect the samples we need if we have the support of EHE patients across the UK, and the help and involvement of patients’ medical teams and hospitals, to ensure that everybody’s samples are captured. It is only by working together with medical oncologists, surgeons, pathologists, nursing staff, personnel who will enrol patients and obtain their consent, and collect, collate, and record all samples and clinical records, that the National EHE Biobank will be successful.

We will continue to strive to make sure that no opportunity to collect a sample is lost. With ultra-rare diseases every sample if critical. We cannot thank the ICR, RMH and GTB enough for their fantastic work in helping to create such a critical component in our overall strategy to fight EHE. We also want to thank all the hospitals, and all personnel in them, that engage with and support the National EHE Biobank, for their support and cooperation.

How will the samples be used?

Different forms of samples will be collected. These will include fresh and frozen tissue samples, and samples in paraffin blocks, originating from a patient’s original diagnostic process, or from subsequent surgery as part of an ongoing treatment programme. Blood and other fluid samples will also be collected as appropriate, including at regular clinical consultations. These samples collectively, combined with anonymised clinical records, will form a key data set for researchers, be that locally, nationally or internationally.

Research access to the biobank samples will be considered for each research proposal submitted to the Access Committee, a group of research and clinical specialists and patient advocates who are responsible for deciding if a research proposal is valid and a sensible use of these rare EHE samples.

So how can you help?

As outlined above, creating an EHE biobank and giving access to these clinical samples  is a key component in our overall research strategy, ultimately leading to our ability to treat the disease. But we cannot do this unless patients support this initiative and consent to their samples and anonymised clinical records being provided to the EHE biobank.

You can help us therefore by engaging with your own medical team and hospital, and/or the National EHE Biobank, to make clear that you want your existing samples and records to be included, and thereafter, to also provide regular fluid/blood samples as appropriate.

Surgery and urgent matters
Eniola Ayeni, Tissue Manager at the Sarcoma Unity, Royal Marsden Hospital

‘Live tissue’ from surgical procedures is particularly important and valuable to researchers who are, for example, focused on developing EHE cell lines. These are procedures where tissue is kept alive in highly controlled conditions, so that the cells continue to grow and divide, providing tissue for other researchers to use. At the present time there is only one EHE human cell lines available in the world. We need more.

If you do have planned surgery to remove EHE tumour tissue, please contact the EHE Biobank Manager by e-mail ( ) with as much notice as possible, so that arrangements can be made to capture these samples.

Sometimes it is not possible to provide a lot of warning about tissue and fluid samples that may become available at short notice. If this happens, please do not think that there is too little time to coordinate sample capture. In such cases please contact the EHE Biobank Manager immediately. They will then do all they can to coordinate the appropriate tissue capture procedures

Information for parties wishing to access the EHE biobank

As an EHE patient, you can access information, ask questions, and discuss the possibility of your samples and records being provided to the EHE Biobank either through your local hospital that is responsible for your primary care, or directly though the National EHE Biobank itself. The following notes have been provided to assist you in gaining information about the biobank.

Patient Information Sheet (PIS)

If you are interested in supporting the EHE biobank by donating your tissue and fluid samples, then the Patient Information Sheet (PIS) can be downloaded below. The PIS provides information about the biobank and we hope will answer your questions. If there is further information required then please contact the EHE Biobank Manager by e-mail ( ) . Your local hospital may also be able to provide this same information and/or answer your questions.

The EHE Rare Cancer Charity is also available should you wish to discuss the biobank. You can do this by contacting Hugh Leonard, Chair of Trustees, at

The Patient Information Sheet can be downloaded here: PATIENT INFORMATION SHEET

Patient Consent Form

An example of the EHE Biobank Patient Consent Form can also be downloaded below. If you have any questions concerning this form, then again you can contact the EHE Biobank Manager by e-mail

If you wish to proceed and provide your consent, you can do this:

  • directly with your medical team at your hospital, who will then contact the EHE Biobank and make arrangements for sample transfer; or
  • directly with the EHE Biobank Manager using the contacts above. If you do this directly with the EHE Biobank it would be useful if you could also notify your medical team of this fact.

Once the biobank and your medical team are aware of your wish to be included in the biobank, they will liaise directly and arrange for sample and record transfers.

Patient Consent Form can be downloaded here: PATIENT CONSENT FORM

2.Medical teams and hospitals

If you are a hospital or medical team that wishes to discuss the EHE Biobank, and how a patient may be enrolled, please contact the EHE Biobank Manager by e-mail ( ).

In addition, copies of the Patient Information Sheet and Patient Consent Form can both be found above.


If you are a researcher that is interested in accessing the EHE Biobank, and want to discuss how this is done, how a research application should be submitted, how it will be evaluated, and associated time scales, please contact the EHE Biobank Manager by e-mail