Title of the register

Scottish Dementia Reserch Interest Register

Name of Principal Investigator
Title Professor
First name John
Last name Starr
Address of institution where award is held
Institution Royal Victoria hospital
Street Address Craigleith Road
City Edinburgh
Postcode EH4 2ND
Country
  • United Kingdom
  • Website

    www.sdcrn.org.uk

    Contact email

    emma.law@nhs.net

    1. Conditions included, or expected to be included, in the disease register
  • Alzheimer’s disease and other dementias
  • 2a. Stated aim of the cohort

    To enable people with dementia and related cognitive disorders, and their carers to have the opportunity to participate in research.

    2b. Features distinguishing this register from other disease registers

    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.

    3a. i) Number of publications that involve use of register to date

    13

    3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)
    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.

    3c. Information (i.e. research findings) expected to be gained from the register

    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.

    4a. Study criteria: age range of participants
    Age in years from: 55
    To (‘until death’ is applicable): until death
    4b. Study criteria: inclusion criteria

    People with dementia and related cognitive disorders.

    4c. Study criteria: exclusion criteria

    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.

    5. Size of the register (i.e. number of patients enrolled)
  • 501 – 1,000 clinical cases
  • 6a. Measures used to characterise participants

    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.

    6b. Are there defined primary and secondary endpoints (e.g. defined health parameters)
  • No
  • 7a. i) Is the register of fixed duration

    1

    7a. ii) Data collection start date

    09-02-2009

    7b. Stage of data collection/analysis for the register
  • Data collection ongoing
  • Data analysis ongoing
  • 8. Funding of the register
    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
    9. Data sweeping
    Number of data sweeps that have taken place none
    10.The clinical (phenotypic) information held in the register from patients and other participants such as family members is
  • Only collected through the study
  • 11. Limit on the number of studies that can be based on this set of patients
  • No
  • 12a. Data stored in a database
    Yes/No % available
    yes 100
    12b. Data held as individual records
    Yes/No % available
    yes 100
    13a. Are data available to other groups

    2

    13b. Access policy/mechanisms for access if data are available to other groups
  • Access Committee mechanism
  • National access
  • Access restricted to peer-reviewed work
  • Applicant needs to provide separate external ethics approval
  • 14. Data sharing policy specified as a condition of use
  • Data to be made publicly available immediately
  • 15a. Are tissues/samples/DNA available to other groups

    1

    16a. Is information on biological characteristics available to other group
  • No
  • 16b. Is the access policy/mechanism for obtaining details of the characteristics the same as that for obtaining other data

    2

    Types: Disease Registers
    Member States: N/A
    Diseases: N/A
    Years: 2011
    Database Categories: N/A
    Database Tags: N/A

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