The 65+ Dementia Study
Research type
Research Study
Full title
Enhanced Creutzfeldt-Jakob Disease Surveillance in the Older Population
IRAS ID
188287
Contact name
Gemma Logan
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
6 years, 4 months, 31 days
Research summary
Are there otherwise unrecognised cases of Creutzfeldt-Jakob Disease (CJD) in the older (65+) population?
CJD is a group of rare diseases called prion diseases, which are associated with an abnormal form of a naturally occurring protein (the prion protein) found in the brain and elsewhere in the body. Around 100 people in the UK are diagnosed with prion disease every year, however there is the possibility that some diagnoses may be missed. This potential case underascertainment is a particular concern in patients aged 65 and above, where dementia is common and prion disease may not be considered, perhaps because clinicians are unfamiliar with CJD or because the symptoms are not typical of prion disease.
This study will involve the investigation of patients with any form of non-typical dementia who present to local neurology and psycho-geriatric services in Edinburgh and the Lothians. Patients will be offered clinical assessment and examination by a CJD specialist and followed-up at regular intervals, with blood sample-, brain scan- and, should the patient die, post-mortem investigations for evidence of prion disease.
It is important to investigate cases of CJD across all age-groups, including the older population, to enable accurate surveillance. The study, funded by the Department of Health (UK) Policy Research Programme, will determine if it is possible to use enhanced methods for the diagnosis and surveillance of CJD amongst non-typical forms of dementia in the older population. This has potential benefits for NHS patients, their management and care and in protecting public health, and could in the future inform routine practice in Lothian and the rest of the UK. The study will also help generate hypothesis on the relationship between prion disease and other dementias that could be investigated as part of future research.
REC name
Scotland A: Adults with Incapacity only
REC reference
15/SS/0196
Date of REC Opinion
4 Dec 2015
REC opinion
Favourable Opinion