The ME/CFS Disease Register aims to address a serious problem in ME research: that of identifying representative groups of subjects for research, in order to be able to draw conclusions applicable to the whole ME/CFS population. All too often, research has been carried out on unrepresentative groups of patients, for example clinic attendees, which thereby exclude seriously affected patients.

The pilot register recruited participants with ME/CFS in an unbiased way from a large population base, by identifying by an algorithm people with ME/CFS in computerised databases of participating GPs. 29 practices took part, covering a population of more than 143,000. Those recruited constituting a cohort for long-term follow-up to shed light on prognosis, and a sampling frame for other studies.

The researchers compared disease register participants with people with ME/CFS identified in a parallel epidemiological study, and they were very similar in terms of conformity to case definitions, sex and age distribution

Objective evaluation confirmed that the approach to case identification, data processing, transmission, storage, and analysis was feasible and effective. The next stage of Register development will involve expansion to nationwide coverage, and the development of linked facilities, specifically a tissue (blood) sample bank and a post mortem tissue archive, to facilitate support for further research studies.

RESUME CFS is supporting the incorporation into the Disease Register of data pertaining to participants in the CHROME project who have given their consent. This will enable continued follow-up of these severely affected people, in order to find out about prognosis and outcomes in this group, about which little is known. CHROME participants will shortly be receiving a request from the Disease Register for some additional information, to ensure that the data held on them is comparable with that held on the register participants recruited directly.

Anyone considering offering to join the Disease Register for ME should go to How Can I Help to download an Application form.

Further description of Disease Registers may be found at http://www.sepho.org.uk/Download/Public/5445/1/disease_registers_in_england.pdf