Olga Borejko, a researcher and project manager at the Department of Old Age Psychiatry, King’s College London, spoke about the benefits of using Join Dementia Research to boost recruitment to a study into dementia with Lewy bodies (DLB), supported by the National Institute for Health and Care Research.

Olga sets up and manages commercial and non-commercial studies for patients with Alzheimer’s disease, dementia with Lewy bodies and Parkinson’s disease at the University’s Department of Old Age Psychiatry. 

She said: “We use Join Dementia Research for every new non-commercial and commercial study we set up. Generally, based on a brief study overview and basic inclusion and exclusion criteria, we are able to access and match a large number of volunteers on Join Dementia Research. They can express their interest in our study, or we can contact potentially eligible volunteers.”

ENLIST-UK study

One of the studies Olga’s team uses the service for is ENLIST-UK, a long-term study taking place across the UK and funded by Alzheimer’s Research UK. The study is looking at identifying the causes of cognitive decline in DLB, the second most frequent cause of dementia.

Olga said: “DLB is associated with poor prognosis and more rapid cognitive decline, as well as high care burden and increased mortality. The cause for this rapid cognitive decline remains unclear. More research is needed to clarify clinical and biological markers for DLB and to develop a treatment.

“The ENLIST-UK study aims to address all these issues. In particular, the study looks at how blood and cerebrospinal fluid biomarkers are associated with clinical and cognitive symptoms in DLB and whether we can use these biomarkers to predict cognitive decline in patients with DLB.”

Boosting recruitment with Join Dementia Research

The ENLIST-UK study is carried out at five UK centres in partnership with local NHS Trusts and more than 80 participants have been recruited. The study has used the Join Dementia Research service to contact potential volunteers. 

Olga said: “Join Dementia Research has made a tremendous difference to the ENLIST-UK study. Firstly, the service has boosted our recruitment significantly, with 30 to 50% of our participants enrolled through Join Dementia Research. We are also able to contact and recruit patients from outside the geographical catchment area for our local NHS trusts, providing more opportunities to patients and promoting research and engagement.

“Our patients say they are extremely grateful as very few longitudinal studies are available for patients with DLB compared with Alzheimer’s disease.”

How to take the most out of Join Dementia Research

Speaking from her years of experience using the service, Olga shared some tips on how to take the most out of Join Dementia Research:

“The most important thing is to have a brief and patient-friendly overview of the study with the study purpose, schedule and potential benefits clearly outlined.

“There is also a fine balance between setting up the key inclusion and exclusion criteria. It’s important that the study is broad enough to provide opportunities to reach out to a large number of patients but also specific enough to pick up the right candidates.

“Lastly, always read the updates made by other researchers, as they provide useful information on patient status. For example, a patient may be hospitalised, unable to be contacted again or currently participating in other research.”

All ethically approved dementia studies from across the UK suitable to recruit from a register can use the Join Dementia Research service. Find out what the service offers for researchers on the Join Dementia Research website.

This article was republished from the NIHR Clinical Research Network South London website. Read the original article.