So, why is funding research for ultra-rare childhood cancers so important?
Only £3 in every £100 spent on cancer research goes to childhood cancers. Treatment options, cure rates and research for paediatric chordoma fall well beneath other childhood cancers.
When we set up the DBW Charity as a legacy to our little boy, we felt passionately about funding specific projects to help progress chordoma research and improve the chances of survival for other children and their families.
In January 2018 and The Drew Barker-Wright Charity made its first contribution, of £30,000, to paediatric chordoma research. below are some images of our recent visit to the lab to meet the team.
Finding the correct project to support was a difficult task but, with the help of The Chordoma Foundation, we were made aware of Professor Adrienne Flanagan and her chordoma project at the Cancer Institute, University College London.
The focus of her research with the funding that she receives is to study the genetic, epigenetic and transcriptomic changes found in the chordoma’s of children and adults.
As chordoma’s are extremely rare, particularly in children, one of the focuses of the project will be to compare and contrast the alterations in paediatric and adult chordomas. This will be achieved by obtaining samples from patients, which is taking place alongside the 100,000 Genomes Project run by NHS England. The aim is to prepare the data sets of these studies which will subsequently be analysed. Such detailed analysis has not previously been done on chordoma.
To make the research more sustainable Dr. Flanagan is setting up a UK-Wide Cohort of patients with chordoma, with the aim of following their outcome over 5-7 years and correlating outcome with genomic / epigenetic and transcriptomic data.
She is now collecting nearly all of the chordoma cases throughout the UK. This is a huge undertaking and also involves Chordoma UK, who are funding staff to biobank samples for the next year. They are also funding a clinical researcher to engage with patients over the country to undertake clinical research for one year. The US based Chordoma Foundation are also providing her with a number of paediatric samples from their Biobank. In the next year we should begin to get answers about the differences and similarities between adult and paediatric chordoma.
Another of the UCL project’s objectives is characterising children and adult chordoma at a molecular level and to understand the disease by testing the effect of a new family of drugs on established chordoma cells lines.
The recently announced launch of a new clinical trial proves that chordoma research is producing results. The Afitinib trial is partly the result of work done by Adrienne Flanagan. Supported by the US based Chordoma Foundation, the trial will soon open at University College London, in addition to Leiden and Milan. While these trials are currently for adult patients, better understanding the similarities and differences between adult and paediatric chordoma may help provide rationale for expanding these trials to include children.
The Drew Barker-Wright Charity continues to raise funds to support this ongoing project. It is only with your help and support that such research can continue. Together, it’s the only way