I've put together some info here about two catalogues from the NHS Information centre which list databases containing clinical data for research - the second (DoCDat) is about to be revived by the NCRI Informatics Initiative through their Oncology Portal - ONIX
Published by the NHS Information Centre, the Information Catalogue is a searchable catalogue of current, proposed and past national data collections relating to health and social care. As a single point of reference the Catalogue supports The Information Centre for health and social care’s primary aim of streamlining data collections and improving access to information.
The Catalogue’s web based search facility allows you to see what information is already available and from where it may be obtained. The Catalogue carries details of 272 collections from the NHS and social care, including those collected by the Department of Health, Arm’s Length Bodies, NHS Regulators (Healthcare Concordat members), Government Departments, professional bodies and anyone who collects health and social care information on a national level. The catalogue includes all Review of Central Returns (ROCR) approved collections, which are mandated for collection from the NHS, and also includes centrally approved social care collections.
The interface to the catalogue is customisable allowing you to select what information about each resource you wish to see at summary level and contains links to data dictionaries and metadata about the mode of data collection.
DoCDat (select the Search tab to get going)
Many of these initiatives have taken inspiration from this seminal catalogue of clinical datasets created and launched by researchers from the London School of Hygiene and Tropical Medicine in 2001. One of the aims of the initiative was to help realise the potential of clinical datasets to support evaluative research by providing independent evidence as to the uses and limitations of each resource in the directory.
A prototype structured questionnaire based on theoretical considerations was developed and refined in trials by a group of researchers, clinicians and information specialists to provide information about security and confidentiality, the data collection questionnaire used by each database, outputs from the database, and information about the management of the database.
In 2005 funding for DoCDat transferred to the Information Centre for health and social care and continued to be maintained and developed by National Centre for Health Outcomes Development in the London School of Hygiene & Tropical Medicine.
Whilst the NHS Information Centre have now ceased to update and maintain the site, it can still be used and (see below) there are plans to republish this valuable resource elsewhere.