Working in partnership with cohort studies
Over 3.5% of the UK population is a member of a long-term health study known as a cohort. These studies offer a wealth of data to help shape our understanding of how dementia develops.
Cohort studies and data
Farsighted scientists as far back as the 1920s set up the first long-term health studies – called cohort studies – and many more have been started since then. The individual records collected, and repeated year-on-year, are often stored in the university that first established the study. As a result, this wealth of research data is often dispersed and inaccessible to other researchers.
DPUK developed the Data Portal to provide scientists and organisations with access to these cohort studies and data. The great value in using existing data is that it provides a long-term view of population health. This is vital if we are to develop new treatments for dementia.
Cohort case studies
CASE-RICH POPULATION COHORTS
These studies follow adults into their seventies, eighties, and some beyond – a stage in life when the risk of dementia increases. Researchers can identify risk and protective factors associated with dementia from these cohorts, as well as study disease progression.
PRODROMAL POPULATION COHORTS
These studies follow adults in their forties and fifties, mainly before clinical symptoms of dementia appear (prodromal). Data from this stage helps researchers understand the risk and protective factors that contribute to dementia. They also support researchers studying early disease progression.
DEMENTIA CASE COHORTS
Dementia cohorts involve studies of patients with a diagnosis of dementia or neurodegenerative disease. They include data from frequent follow-ups, and extensive assessments of individuals, detailing the progression of the symptoms and disease. This helps researchers understand the care needs of individuals and their families. Many of the studies involve a healthy control group of participants.
GENETIC RISK COHORTS
Genetic risk cohorts include individuals who carry genes that increase the risk of dementia or neurodegenerative disease, for example Parkinson's or Huntington's diseases. Disease progression is measured by cognitive and neuropsychiatric assessments, and clinical features, disease biomarkers, and neuropathology.
The Data Portal guides and help
DPUK's Data Portal has brought together over 40 different cohorts, making them available to researchers worldwide.
Recruiting to studies from cohorts
Inviting the right people to take part in appropriate clinical trials is critical for developing effective treatments.