Scottish Dementia Reserch Interest Register
| Title | Professor |
| First name | John |
| Last name | Starr |
| Institution | Royal Victoria hospital |
| Street Address | Craigleith Road |
| City | Edinburgh |
| Postcode | EH4 2ND |
www.sdcrn.org.uk
To enable people with dementia and related cognitive disorders, and their carers to have the opportunity to participate in research.
There is no other disease register like this in the United Kingdom, for people with dementia. It gives people the opportunity to participate in research and gives researchers access to people who have already consented to participate in research with a set of baseline assessments completed. It allows detailed feasibility studies to be commenced and offers the opportunity for researchers to do detailed epidemiology studies in the field of dementia.
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| 1. Name of PI | Michaela Dewar, University of Aberdeen, Long term beneficial effects of Minimal interference in MCI. Derek Brown NHS Greater Glasgow and Clyde – Observational cost of Alzheimer’s disease in Europe (GERAS). Alasdair MacLullich University of Edinburgh Development of a new neuropsychological instrument for assessment and monitoring of delirium. |
The main purpose of the register is to allow easier access to patients and carers for research and therefore make the process much quicker. The type of findings expected will cross a whole spectrum of the disease trajectory including the outcomes of drug studies, psychological interventions, improved knowledge of non-pharmacological interventions, the use of anti-psychotic drugs within a population, predictors of vascular disease and improved treatment options for vascular dementia, language and social cognition in frontal temporal dementia as compared to motor neurone disease. There is no limit to the use of the register for people with dementia and their carers.
| Age in years from: | 55 |
| To (‘until death’ is applicable): | until death |
People with dementia and related cognitive disorders.
People who have had no contact with a healthcare provider – diagnosis or cognitive disorder must be confirmed by a healthcare provider prior to inclusion on the register.
Family name, given name, maiden name, Community Health Index number, address, diagnosis, date of consent, GP, capacity to consent, details of person consenting on their behalf, carer details, cognitive status, functional ability, behavioural or psychological symptoms present, family history, concomitant disease, medication, sensory impairment, communication difficulties.
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09-02-2009
| How the register is funded | Through the Chief Scientist Office of the Scottish Government |
| Is funding ongoing | yes |
| If so, for how long | until July 2011 – Awaiting outcome of further funding decision |
| Number of data sweeps that have taken place | none |
| Yes/No | % available |
| yes | 100 |
| Yes/No | % available |
| yes | 100 |
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