Aim

The primary aim of BADGEM's informatics sub-group is to generate a UK wide disease register for rare genetic skin diseases, to ulimately help facilitate recruitment into clinical trials.  The group has defined a minimal data set which will be collected into a register hosted and housed by the Health Informatics Centre in Dundee in a secure NHS environment.  The infrastructure for this register is currently under development and please check back here at a later date for further updates.

Appropriately qualified healthcare professionals (primarily Consultant Dermatologists, or other nominated professionals on their behalf) will be able to request access to the database through the British Association of Dermatologists.  All data is treated confidentially and consultants will only be able to view and access data on their own patients.  Subject to appropriate approvals and consent, aggregated data may be used for research purposes.