Biobank is up and running

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28 December 2021

As we approach the end of the year, one of the achievements that The EHE Rare Cancer Charity is proud of is the set up and launch of the UK national EHE biobank, based at the Royal Marsden Hospital, Hugh Leonard explained:

“The National EHE Biobank went live in Q2 here. Since then we have had 14 people enrol. We hope more will follow because the more people we can get to enrol the more samples we will have which will make a difference to future research possibilities. So we would love everybody who can, and is prepared to, to enrol with the EHE Biobank.”

You can learn more about the EHE biobank on the charity website, or by simply reaching out to the biobank coordinator as listed below, if you want to discuss your participation and the donation of your samples to the biobank.  Hugh Leonard summarised the situation:

“If you are having a procedure that will result in the removal of fluids or tissue associated with EHE, or even just giving bloods at a regular consultation, and if you want your samples to help research, then please contact the biobank of charity personnel. They will help you with the donation process which is really quite easy. But if you do nothing, some of your samples may be destroyed or lost, and those retained will be simply stored with no easy way to ultimately connect them to EHE research. Remember, your samples can provide huge research benefits, but we have to capture them first”.

Many of our patients do understand the fundamental importance of supporting the biobank. One such example was Chris and Cheryl Cotton. Even on the morning of Cheryl’s loss, Cheryl wanted to promote the importance of biobanking:

“With the greatest sadness I lost my husband this morning to EHE. His short but difficult battle only lasted 29 weeks from being fit and well with just a niggly bad back to losing him, but he managed to successfully donate samples of his hip to the EHE biobank. As an academic, the knowledge that Chris had helped by making this donation gave him comfort. Thank you for all the support and information this group offered us during this difficult time.”

We send our deepest sympathies to Cheryl and all Chris’s family, but at the same time say a huge “thank you” to them for their support of the biobank and EHE research, even during such a difficult period.

For those who are interested, here are the relevant contacts for those who can help you with the EHE biobanking process:

  1. Contact the EHE Tissue Coordinator at the National UK EHE Biobank at the Royal Marsden Hospital, at; or
  2. Hugh Leonard at the EHE Rare Cancer Charity (UK) at ; or
  3. Visit the EHERCC biobanking page at:
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