A204: A PROMS enabled, bespoke, web-based clinical database system for multicentre rectal Carcinoma registry
1St. Lukes Cancer Centre, Royal Surrey County Hospital, Guildford, Surrey, UK
A clinical data registry was required to support the data requirements of the UK patients undergoing rectal brachytherapy. These requirements included the need to allow Patient Reported Outcome Measures (PROMS) data entry, multi-centre access, discussion forums and customised data extraction and visualisation. Additionally the ability to connect data feeds from other sources (e.g. imaging, genetics, pathology) was key to driving a bespoke solution.
A bespoke, extendable and customisable web-based clinical data repository system has been developed in-house. PROMS data entry is achieved by allowing data managers to assign each case a patient login. Patients are able to enter data via a simple web-interface or App before/during consultation. The registry has been designed to allow multi-centre data input while allowing consultants from disparate centres to be given permission to view other centres cases.
Contact brachytherapy for rectal cancer provides an organ-sparing approach for patients with low rectal cancer. It can also be used in surgically unfit patients to give better control than external beam radiotherapy alone. Papillon therapy carries a slightly higher risk of local recurrence than surgery but relapse can be treated with surgical excision. As a new technique, relatively few patients have had treatment, so research is needed to better understand how it can help to tackle certain forms of rectal cancer. An extendible web-enabled database has been developed which allows a bespoke and advanced data registry to be developed and deployed relatively rapidly.
A national rectal carcinoma registry has been created, which will research and track the effectiveness of Papillon treatment for all UK Papillon patients and follow potential toxicity from the procedure. Patient access and data entry will allow documentation of PROMS and survivorship issues and give a patient-led focus to follow up for this motivated group of patients.