For no personal gain, health study volunteers have consented to health tests and lifestyle questions – often over a number of decades. Some health studies now grant access to these data through the Dementias Platform UK (DPUK) – the richest single source of dementia focussed health study data. Protecting this valuable data demands the highest standards of privacy and security. To this end, personal data is stripped out so that individuals cannot be identified and data are managed according to ISO 27001 standards. Researcher can only access the data through a secure online environment, which prevents data being downloaded.
Professor John Gallacher, Director of DPUK, said ‘Long-term health data is really important for two reasons. Firstly, it helps us identify the patterns of change or decline in healthy brains because this is how science will discover how dementia starts. Secondly, it helps us pinpoint the right volunteers for targeted dementia trials to help develop new treatments. Dementia starts up to 20 years before the first symptoms show and just like cancer we need to find out how to treat it early, before the disease does substantial damage’.
Without the data from health study volunteers, researching and developing preventative treatments will take decades. The value of health study volunteers is that their data already exists and we can take advantage of this now in searching for new treatments.
We need health studies participants to volunteer for clinical trials if we are to speed up the discovery of preventative treatments for dementia. At the end of 2018, DPUK will launch a clinical studies register that recruits health study volunteers for a new generation of targeted clinical trials. As with all DPUK endeavours, this will work to highest standards of privacy and security. Participants can choose whether they wish to join, and make their own decisions about the type of trials they would be willing to support.
On World Alzheimer's Day it’s important to recognise the generosity of cohort volunteers who contribute data to DPUK cohorts. DPUK is helping researchers accelerate the development of treatments for dementia.
- John Gallacher, DPUK Director