Our Biobank Facilitator Dr Zoe Davison shares the latest news on the Bone Cancer Research Trust Biobank.
In order to understand primary bone cancer fully, it is essential for researchers to have access to patient samples and to examine these carefully in their experiments. These samples give us the best insight in to what is going wrong and making the cancer grow and so gives our researchers the best chance of discovering new ways to treat these diseases. Researchers looking in to primary bone cancer find it very difficult to access enough patient samples to conduct their research due to the rarity of the disease.
For the very rare forms of primary bone cancer, of which there are at least 9 and together account for only 15% of all diagnosed primary bone cancers, it has been more or less impossible to access samples, and if samples were donated, there may be only a small number in each hospital – not enough to do research on in isolation. This has meant that very little research in to these types of primary bone cancer has been conducted, meaning patient outcomes have not changed for many years.
We want to bring an end to this problem. We want to ensure that every patient, diagnosed with any form of primary bone cancer, has the opportunity to donate samples. Through our biobank project, we are developing a collaborative network of clinicians, researchers and patients. We are moving away from isolated collections of small numbers of samples, and encouraging clinical centres to contribute patient samples to our national initiative, which will give researchers access to larger numbers of samples – making it possible to research some of the more rarer forms that have been studied much less. We will treat these samples with huge respect, and ensure that they will be available for the best research.
In order to launch our biobank, we must have a secure database, so that we know which patients have consented to donate samples and whether any samples have been collected. We are keen to make our database the heart of our biobank project, so that patients can engage with this project and have a chance to be involved in our research. We are working with a research group from the Nuffield Orthopaedic Hospital and the University of Oxford, to develop a patient portal. This group have developed a portal for rare musculoskeletal diseases called RUDY, which allows these patients to log on and to enter data such as how they were diagnosed and if there was a delay, any side effects of treatment and to report on their quality of life at different stages of their treatments and disease. This kind of data is very important in primary bone cancer and could help our researchers and clinicians, however, it hasn’t been recorded previously.
The team in Oxford are in the process of adapting this portal to customise it for our patients, but we want this portal to be patient focused, and in order to do this, we need your help!
We are looking for patients of any age, family members and interested people to be involved in trying out the RUDY portal and helping the Oxford team, and our National Biobank Facilitator to develop something that is both user friendly and, importantly, what our patients want.
If you could help, please get in touch to find out more.