Case Register Assessment and Evaluation (CReAtE Study)

  • Research type

    Research Study

  • Full title

    Case Register Assessment and Evaluation (CReAtE Study): How do patients on the "DeNDRoN" register who have taken part in research studies differ from those who haven't?

  • IRAS ID

    171888

  • Contact name

    Fraser Birrell

  • Contact email

    fraser.birrell@ncl.ac.uk

  • Sponsor organisation

    Northumberland Tyne and Wear NHS Foundation Trust

  • Duration of Study in the UK

    0 years, 8 months, 30 days

  • Research summary

    This study is looking at the differences in characteristics between those patients who are approached about “DeNDRoN” studies who agree to take part in research and those that don’t.

    The "record of approaches" to people on the Clinical Research Network (CRN) Dementias and Neurodegeneration Specialty (“DeNDRoN”) Research Case Register will be looked at to determine the differences between those who have taken part and those who haven't. The Case Register is a database of people with a diagnosis of either a dementia or other neurodegenerative disease who are interested in hearing more about research in their disease area. Further to this they can be approached direct about research studies they may be eligible for. It is thought that age, gender, disease type, disease duration, method of approach, type of study, if the participant has mental capacity and if the participant has a carer may be some of the reasons why people do not take part.

    Additionally for those participants who have refused to get involved and have given a reason for their decision these will be looked at to determine any common themes.

    It will be useful to find these reasons for refusal as they could be used to design future research studies addressing these reasons for refusal and thus ensuring more patients are included in research studies. It will also be useful for the CRN to understand these reasons to see if there is any need to change the way patients are recruited to the Case Register.

  • REC name

    London - City & East Research Ethics Committee

  • REC reference

    15/LO/1871

  • Date of REC Opinion

    19 Oct 2015

  • REC opinion

    Favourable Opinion