To advance research into paediatric chordoma, tissue and blood samples are needed from children with chordoma. When a tissue sample is taken from your child it should only be for helping to diagnose and/or treat your child appropriately. Sometimes, there might be some of the sample that is surplus to these requirements – this can be a very valuable resource for research, but doctors and researchers can only use such a sample with the consent of a parent or guardian.
A doctor may approach you before your child is due to have surgery and ask for your consent to take a sample from your child while they’re asleep during surgery. Or they may ask for your consent to take a little extra blood for research purposes when a blood sample is being taken for other purposes. This can seem inappropriate, or even a little offensive, when your minds and hearts are so focussed on getting your child (and indeed your whole family) through an extremely challenging time. It can be very difficult to think about this when you are struggling with so much else. Unfortunately, however, if your consent is not obtained prior to surgery it may mean that some important research into paediatric chordoma cannot be carried out.
Whether or not you provide consent is entirely your choice. We mention it here so that perhaps you can carve out a little bit of time to think through whether you would want to give consent should you be asked – to be forewarned is to be forearmed.
It is the intention of The Drew Barker-Wright Charity to fund vital research into paediatric chordoma so that doctors can learn more about his rare and devastating cancer. So far, we have contributed £30,000 of funding towards Professor Adrienne Flanagans’s project taking place at The Cancer Institute, University College London through The Chordoma Foundation, and another £20,000 directly.
One of the aims of this project is the formation of a UK-wide Chordoma Cohort: as chordoma is so rare it is important to identify all children with chordoma in the UK so that we can learn more about this disease. We hope this will represent the first step towards the initiation of clinical trials of promising new drugs for paediatric chordoma.
Read more about the project The Drew Barker-Wright Charity is helping fund.