BCRT is the leading charity dedicated to fighting primary bone cancer, through research, information, awareness and support. Exasperated that outcomes for patients had seen little improvement in 30 years, it developed an innovative new approach to nationwide sustainable patient sample collection.
For the research community to fully understand primary bone cancer and to find new ways to develop treatments, tissue samples of the disease are needed for use in the laboratory. However, a range of issues were preventing these being collected from patients at treatment centres. New funding was being stifled as the chances of success were comparatively low, and research was concentrated on other forms of cancer where samples were available. Additionally patients were frustrated at not being given the opportunity to support research.
In 2016 primary bone cancer fell into the remit of the government-funded 100,000 Genomes project, providing an amazing opportunity to uncover the genetics associated with these tumours. Therefore BCRT began preparatory work for a new model of tissue sample collection, which involved equipping existing surgical centres around the country to collect samples, rather than the conventional model of building a single physical biobank.
In early 2018 the National Biospecimen Collection Project was fully rolled out to all bone cancer surgical centres. Almost 300 patients have been identified. Of these, 256 were deemed appropriate to be approached for consent, and samples have been gathered from 231 of them. A total of 1,167 samples are now actively supporting 14 current research projects including the genomes one.
As well as allowing patients to be involved in research like never before, professor Jeremy Whelan at University College London confirms that without the support of BCRT “a mere fraction of samples would have been collected and made available”.
Awards judge Lynne Berry said: “They demonstrated great success in getting an awful lot of patients to donate samples, in a very cost-effective way.” Danielle Walker Palmour said the charity appeared to have listened closely to its beneficiaries and was driven to act by their needs.
CIO reg no: 1159590
Migration Observatory reported in 2014 that “evidence on physical and mental health suggests there are poorer outcomes overall for non-UK born individuals residing in the UK” while Mind stated in 2013 that “migrants are at higher risk of homelessness and destitution, which impact detrimentally on mental health”. Building on the fact that client need and co-design had always been central to its work, RMC developed a needs assessment tool to facilitate the negotiation of action plans optimising a client’s health. As a result, among many positive outcomes in the past five years, it has ensured that almost all asylum seekers in Wolverhampton (estimated at 2,000) are GP registered, and identified 125 carriers of latent TB, with 95 per cent successfully treated.