海角社区

Written on behalf of Professor Alan Chalmers at WMG and Malcolm Barnes at Superlunary Labs

(13-19 May) highlights the vital role engaging with the public can play in identifying new ways to diagnose and treat diseases such as . The story of Coventry鈥檚 Carol Jennings, which was aired in a BBC documentary on the 13^th May, demonstrates how crucial this can be for progress in understanding the disease.

Carol wrote to Imperial College in April 1986, asking if she could help with their 础濒锄丑别颈尘别谤鈥檚 research. She came from a large family, many of whom were suffering with early on-set 础濒锄丑别颈尘别谤鈥檚. Scientists at this time had not found evidence of a genetic cause for the disease, but the experience of Carol鈥檚 family suggested otherwise. Researchers at Imperial College responded to Carol and analysed genetic samples from her family and the result was the Amyloid Cascade Hypothesis - the first evidence of a genetic factor in the development of 础濒锄丑别颈尘别谤鈥檚 disease. This major breakthrough would not have been possible without the collaboration between Imperial College London and Carol Jennings.

Yet today, research in this field is still faced with challenges when it comes to diagnosis and treatments for 础濒锄丑别颈尘别谤鈥檚 and .

WMG at the University of 海角社区鈥檚 Professor Alan Chalmers is currently researching how flavour perception can be an indicator of neurodegeneration, with accompanying technology provided by Superlunary Labs. The end goal is to develop an accessible, mass-market screening test for flavour perception that can point people to further investigation, enabling earlier diagnosis and treatment. This is especially relevant right now as new drugs are appearing which can slow the progression of 础濒锄丑别颈尘别谤鈥檚 Disease, but only if the disease is caught early.

While the research is promising, the challenge of engaging the right audiences for data collection remains. Professor Chalmers points to the fact that most university research is trialled using easily accessible staff and students, but this is not reflective of the target audience. It often lacks the diversity needed to provide the most valuable data, and access to those who are living with the condition.

To overcome this, Professor Chalmers and his team have been working with MPs to reach a more general population. While this work has been successful, with multiple sessions held in constituencies across the country to test flavour perception, collecting enough of the appropriate data continues to be a challenge for both researchers and MPs鈥� offices.

What can we do to make developing early screening for dementia diagnostics faster and more easily accessible?

Professor Chalmers is proposing a National Engagement Framework, which would gather individuals willing to participate in general population research. Such a network could mean that researchers, like Professor Chalmers, can quickly and easily access the people to undertake meaningful work. Meanwhile, families who care deeply about future research into the treatment and diagnosis of the disease will have a pathway through which they can contribute to this research and thereby make a real impact.

In addition to a pool of volunteers, the framework would contain information as to where may be an appropriate venue for testing, and how the local community are best reached, along with further valuable information for researchers. The framework would support the publics engagement with research which, as the story of Carol Jennings shows, can make a real difference in tackling the condition.

Professor Chalmers believes such an approach will have other benefits too. The NHS has a target to try and diagnose two thirds of people with dementia. However, a recent APPG for Dementia report highlighted the discrepancy in 础濒锄丑别颈尘别谤鈥檚 diagnosis across the country and the need for more country wide screening – particularly in rural and deprived areas. The National Engagement Framework could help 鈥渃lose the gaps鈥� in dementia diagnosis across the country, providing more equal access to the new drugs.

Watch 鈥淭he Jennings v 础濒锄丑别颈尘别谤鈥檚鈥� here:

Find out more about WMG鈥檚 research here: Visualisation Group (warwick.ac.uk)