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Developing a Dementia Registry: a descriptive case study from North Thames DeNDRoN and the EVIDEM programme

Iliffe, Steve, Curry, Lisa, Kharicha, Kalpa, Rait, Greta, Wilcock, Jane, Lowery, David, Tapuria, Archana, Kalra, Dipak, Ritchie, Craig (2011) Developing a Dementia Registry: a descriptive case study from North Thames DeNDRoN and the EVIDEM programme. BMC Medical Research Methodology, 11 (9). (doi:10.1186/1471-2288-11-9) (The full text of this publication is not currently available from this repository. You may be able to access a copy if URLs are provided) (KAR id:36591)

The full text of this publication is not currently available from this repository. You may be able to access a copy if URLs are provided. (Contact us about this Publication)
Official URL
http://dx.doi.org/10.1186/1471-2288-11-9

Abstract

To describe the development of a dementia research registry, outlining the conceptual, practical and ethical challenges, and to report initial experiences of recruiting people with dementia to it from primary and secondary care.

Background

A technology development methodology was used to develop a registry of people with dementia and their carers. This involved phases of modelling and prototype creation, 'bench testing' the prototype with experts and then 'field testing' the refined prototype in exemplar sites. The evaluation of the field testing described here is based on a case study methodology.

Utility

Easier recruitment may perpetuate potential selection biases and we are not yet able to assess the representativeness of the research-ready population recruited to the registry. The need to recruit from wider populations, through primary and social care, remains. The success of this registry will be measured by the proportion of people from it who are recruited to research projects, and its impact on overall accrual to studies.

Item Type: Article
DOI/Identification number: 10.1186/1471-2288-11-9
Subjects: H Social Sciences > HV Social pathology. Social and public welfare
R Medicine > RC Internal medicine > RC321 Neuroscience. Biological psychiatry. Neuropsychiatry
R Medicine > RC Internal medicine > RC952 Geriatrics
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Depositing User: David Lowery
Date Deposited: 19 Nov 2013 10:08 UTC
Last Modified: 16 Feb 2021 12:49 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/36591 (The current URI for this page, for reference purposes)
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