by Simon Rodwell | 15 September 2012 11:24
Melanoma is the UK’s fastest-growing cancer, yet there is still a lack of basic clinical information about the disease, including stage distribution and equity of access to treatments. Such deficiencies hinder the development of research and treatment.
Melanoma Focus’s Database Project was set up to improve data collection for melanoma and other skin cancers, allowing individual centres to plan and audit their services, as well as performing research individually or in collaboration with other participating centres. A wide range of standardised data is collected, with the National Cancer Intelligence Network (NCIN) dataset as the minimum. Importing data from the Somerset Cancer Registry is fully approved and the option to pull data from other hospital systems is negotiable. Data tracking and checking are integral to the system, ensuring that the data collected are complete and conform with, or exceed, the NCIN’s Cancer Outcomes and Services Dataset (COSD) standard for cancer reporting for NHS England.
Each participating Hospital Trust can interrogate its data at will as well as receiving regular standardised reports. The dataset is fully anonymised and stored within a central data repository, to be used for audit and research under the oversight of Melanoma Focus. Raw data will not be released but aggregated reports will be posted on the Melanoma Focus website. Research projects will be approved by the charity’s Data Monitoring Committee.
There is full funding of the project at each participating site for three years, including a fixed sum to employ a manager for data collection. The project has been generously supported by Roche, by means of an educational grant. Melanoma Focus is working closely with Icarsis Limited, which is providing the platform to collect and aggregate the hospital skin cancer data and to interrogate the anonymised dataset.
The Melanoma Database Project has made good progress in forming partnerships with NHS Hospital Trusts across the country. Several Trusts have begun work on the project, with more than 16,000 patient records already on the system. Other Trusts will go live soon or are in the set-up phase and the pilot target of 10 centres is expected to be achieved shortly. The next phase of the project will concentrate on achieving completeness of data and outputs.
The charity has retained the services of Professor Barry Hancock OBE as its roving ambassador for the project.
Any Trusts wishing to explore the possibility of taking part in this important project should contact Simon Rodwell (firstname.lastname@example.org) for further information.
Source URL: https://melanomafocus.com/activities/database-project/
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