Patient data is a crucial resource in research. It helps identify short, medium and long term outcomes of treatment and factors that might affect these. This information leads to major breakthroughs in improving care.
A BDRF funded study called OnCoRe started the ball rolling on one such breakthrough, with its findings published in the Lancet Oncology journal back in 2015. They suggested that rectal cancer patients who have a ‘complete response’ to chemoradiotherapy (ie the complete disappearance of their cancer from scans & endoscopy) can safely avoid radical surgery. Their recommendations, that this knowledge should be taken into account by Doctors from the outset of chemoradiotherapy treatment, are changing NHS standard practice. Having been presented to specialists from across Europe last year, it now also has possible global impacts.
— BowelDiseaseResearch (@BDRF1) September 28, 2018
But it doesn’t end there. During the study, the team established a database of over 170 patients who had benefited from a complete response to treatment. In late 2017, a decision was made to convert this dataset into a national Research Database recognised by the NHS Health Research Authority – enabling the team to continue collecting data and adding new patients.
Last year the database went live – with its own website and Twitter feed. It is already the largest registry of its kind in the UK, and one of the largest in the world, and that’s with just 181 patients from 25 sites signed up to submit data.
Support from as many hospitals as possible around the country is now needed – so whether you’re a doctor, patient or just want to help spread the word, please help to get your hospital signed up!
We’re extremely proud to have funded a study that has led to the creation of a national registry of people to have the best possible response to chemoradiotherapy. So much knowledge is waiting to be discovered, and truly life-changing advances in treatment could be made from the data collected.
A huge thank you is due to all of our donors and supporters who helped to make this happen – without your donations and help, we would not have been able to support the project get off the ground. Huge tribute must also be paid to the dedicated research team, healthcare professionals and above all patients who have consented to be part of the database. Onwards and upwards in 2019!