A participant's perspective
Dementias Platform UK is bringing together over 50 cohort studies to create world's largest study group for dementia research. Marianne Talbot is a participant in one of the studies that makes up this resource.
"When I mention I am a member of a ‘cohort’ I am often asked what I mean. A cohort is a group of people who share certain characteristics. Teachers use the word, for example, to refer to those of a given year group (pupils in year ten, for example, are a cohort). Medical researchers are usually interested in more than age.
I am a member of the ELSA cohort. ELSA stands for ‘English Longitudinal Study of Ageing’. This study started in 2002 and the other members and I were all over 50 when we joined. In signing up we agreed to share information on just about everything. Every two years, I get a visit from someone armed with a very long questionnaire. Every four years a nurse comes to visit and give me a full physical.
All the information collected from me and all the other members of the cohort – almost 12,000 people – is anonymised and then made accessible to bona fide researchers. Researchers hope to find correlations between certain characteristics (physical, social, economic, genetic) and various health outcomes. They want to find out what biological or lifestyle factors, or combinations of these factors, are associated with diseases.
DPUK is important to the effort because it helps to collate the data from many different cohorts. This makes it easy for researchers, whatever their interest, to interrogate all the available data to discover exactly what they need to know. If, for example, a researcher is interested only in post-menopausal women who had high blood pressure at 50 and who have suffered from anxiety, they will be able to isolate just that data.
I love being a cohort member because it makes me feel useful. The information that I, and other cohort members, give will eventually bring about new diagnostic techniques, treatments, and hopefully even cures for the diseases that cause dementia. Surely that is worth two hours of my time once every two years?"