Action for M.E. provided funding so that a patient outcomes database developed by the University of Bristol, could be expanded to form a National Outcomes Database (NOD) for England.
The NOD combines data from 33 clinical teams in England. It is now the largest single database of M.E./CFS patients in the world, providing the potential infrastructure for large scale biomedical and treatment studies.
Some initial socio-economic findings were reported at the British Association of CFS/ME (BACME) conference 2010.
A paper on the impact of CFS/M.E. on employment and productivity was published in BMC Health Services Research, September 2011.
Potential for genetic research
As the database is so big, Action for M.E. is particularly interested in the NOD’s potential to support genetic studies, such as a Genome-Wide Association Study (GWAS).
In a GWAS, the genes of people with a disease are compared with the genes of people who do not have that disease, to see which genetic differences are important.
The charity has funded NOD researchers to undertake some ‘proof of principle’ studies into cost-effective DNA sample collection from large numbers of patients.
Although an initial bid for Medical Research Council (MRC) funding to establish a GWAS was unsuccessful, the bid will be revised and further applications made.