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International Clinical Trials

The Burden of Time

“Burdens are for shoulders strong enough to carry them” Margaret Mitchell

There is a general consensus of the need to increase the opportunities for patients and their family members to take part in appropriate research. This is because the range of patient groups and supporter experiences are pivotal to the success of studies and the confident extrapolation of data. Similarly, improving participant retention is also a key concern, and there is a drive to ensure, rightly, that patients are not excluded or unnecessarily discouraged from taking part.

There has been a huge shift towards patient-centred approaches in dementia research with the increased involvement of patient participation involvement groups as it is recognised that the goodwill of participant groups is enhanced by a positive research experience and hindered by a poor one. Therefore, a great deal of consideration has been given to factors that may influence participant burden.

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About the author

Shani McCoy has worked in research delivery for the R&D department at Berkshire Healthcare Foundation Trust for a total of five years. Prior to this, she worked on a number of her own research studies both behavioural and neuroscience-based. Shani currently works in the trust as a Clinical Research Practitioner for the Memory and Cognition Research Unit based at the University of Reading, UK, delivering a variety of research protocols in the field of dementia and neurodegenerative disorders. She is a member of Join Dementia Lead for Berkshire, which is the national dementia research database of the NIHR.
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