They are
- The CCRG is the research group responsible for keeping the UK’s registry of childhood tumours.
- Specialists in providing analysis of trends and distributions of childhood cancer incidence, mortality and survival.
- Researchers in several specialist areas including childhood Myelodysplasia (MDS) which is a rare form of pre-leukaemia.
They needed
- A database to safely record and store the clinical details of all UK based children registered with MDS since 1990.
- To link the database to the National Registry of Childhood Tumours (NRCT).
- To use the database to aid the differential diagnosis of the different types of MDS and where necessary to exclude patients from the register.
- To create personalized letters to a range of stakeholders involved in the care of these children
- To export files from the database for survival analysis by SPSS a specialist statistical software package.
- To use data from the database in the compilation of research presentations and papers for academic journals.
We provided
- Expertise in designing and installing software for medical research in a sensitive, secure and confidential environment.
- A user friendly database linked to and complementing their existing NRCT registry.
- Drop down lists for many data entry options with the ability to add, edit and delete list items via the menu.
- Dynamic reporting and searching facilities with mail-merge functionality.
- Facilities for aiding specialist parameter-driven, research questions and for calculating specialist scores such as the FAB score.
And the end result?
- The register is actively used in the management and research of patients with MDS in the United Kingdom.
- Data from the database has been used in the production of several research papers and as a result, the knowledge and care of this rare condition has been better informed.
