Implementation of the myelodysplasia registry

Background

The Childhood Cancer Research Group maintains the National Registry of Childhood Tumours (NRCT). The CCRG offered to house a Registry of children diagnosed in the United Kingdom with Myelodysplasia alongside the NRCT.

Objectives

The Myelodsyplasia Database needs to fulfill several objectives:

1. To act as a safe repository for the clinical data of all United Kingdom based children (under 15 years old) who have been registered with Myelodysplasia (MDS) since January 1990.
2. To link the database to the National Registry of Childhood Tumours (NRCT) in order to identify cases which are registered in both registries.
3. To create letters to send to UK pathologists and haematologists requesting information on children that they have diagnosed with MDS.
4. To create letters to send to the consultants of children registered on the database requesting further information on their MDS.
5. To use the database to aid the differential diagnosis of the different types of MDS and where necessary to exclude patients from the register.
6. To export files from the database for survival analysis by SPSS. The data is stored in SQL Server tables on a secure server.
7. To use data from the database in the compilation of research presentations and papers for academic journals.

Development and Implementation

Advent IT developed the database in SQL Server. The data is stored in several related tables containing: demographic; diagnostic; hospital and consultant; blood counts; cytogenetics; treatment; bone marrow transplants and follow up information. A Microsoft Access Project is used as the front-end interface. A menu system allows the selection of several tabbed, data-entry forms and reports for mail-merges and SPSS analysis. Myelodysplasia research is dependant on the derivation of several variables such as the FAB score for which the database has a dedicated section.

Research Benefits

The register is actively used in the management and research of patients with myelodsyplasia in the United Kingdom. Data from the database has been used in the production of several research papers most notably: Passmore SJ, Chessells JM, Kempski H, Hann IM, Brownbill PA & Stiller CA (2003) Paediatric myelodysplastic syndromes and juvenile myelomoncytic leukaemia in the UK: a population-based study of incidence and survival.
British Journal of Haematology, 121, 758-767.