Scottish Dementia Research Interest Register renewal

  • Research type

    Research Database

  • IRAS ID

    216759

  • Contact name

    John Starr

  • Contact email

    jstarr@staffmail.ed.ac.uk

  • Research summary

    Scottish Dementia Research Interest Register renewal

  • REC name

    Scotland A REC

  • REC reference

    17/SS/0004

  • Date of REC Opinion

    6 Jun 2017

  • REC opinion

    Further Information Favourable Opinion

  • Data collection arrangements

    The Register will collect clinical data from people with dementia and related disorders together with measures of cognitive function, functional ability, and behavioural and psychological symptoms. Data on related carers may also be collected to facilitate contact and also to facilitate research where information from carers is involved.Following consent, data will be collected by a Clinical Study Officer employed by the NRS Dementia and Neuroprogressive disease Network.

  • Research programme

    The register is primarily to facilitate contact of people with dementia and related disorders so that they can be offered participation is research studies relevant to them (e.g. related to their specific diagnosis or treatment). Such research studies may be observational, questionnaires, clinical trials etc. Each such study would require specific consent from the person whose details are held on the register; being on the register does not commit anyone to participating in any research, it only indicates willingness to be contacted to consider participation. The data also allows linkage to electronic health records; again, this will primarily be helpful in ensuring that people who would not be suitable for a particular research study because of some health condition are not approached unnecessarily.

  • Research database title

    Scottish Dementia Research Interest Register renewal

  • Establishment organisation

    NRS Dementia and Neuroprogressive Clinical Research Network

  • Establishment organisation address

    The Hub Office, Murray Royal Hospital

    Muirhall Road

    Perth

    PH2 7BH