Select Page

The Defeating Dementia in Down’s Syndrome Research Group goes to Rome for the T21RS international conference

by Ellie Maycock
5 June 2024


 

We are a research team from the University of Cambridge who run studies which are all focused on learning more about how we can detect earlier, and better treat, dementia in people who have Down’s syndrome.

This week, we are incredibly grateful to have been supported by the DSA to attend the Trisomy 21 Research Society international conference!

During this conference, there will be many talks, symposia, and scientific posters, all of which will be presenting the cutting-edge advancements in science which are working to improve the quality of life for people who have Down’s syndrome. Each day, we would like to share some of the key messages and useful resources from the presentations we have attended.

On our first day, we were very excited to arrive in Rome and register at the conference. The first day is being held at Sapienza University, which is a beautiful campus and the oldest university in Rome. It was great to meet colleagues and hear from the conference committee about their plans for the future of the research society.

Today we attended the clinical symposia, which focused on new and emerging results and developments in clinical care for people who have Down’s syndrome.

Speakers shared best practice and recommendations for encouraging healthy lifestyles and understanding cognitive decline in people who have Down’s syndrome. Here are some messages from the talks:


 

Dr Nicolas Oreskovic from Massachusetts General Hospital shared some tips for maintaining a healthy lifestyle in individuals who have Down’s Syndrome.

He recommended 150+ minutes of mildly vigorous physical exercise per week for adults who have Down’s syndrome as well as reducing sedentary time, ensuring adequate sleep and nutrition, and increasing social networks.

He suggested accessing the Special Olympics & the healthy ageing resource library from the Massachusetts Down Syndrome Congress.


 

Dr Brian Skotko from the US told us about their app ‘Down Syndrome Clinic to You’ (DSC2U).

It is an online portal designed to connect families to personalised health and wellness recommendations and useful resources. Users will be asked to identify current symptoms which are analysed electronically and the output contain customised suggestions that are designed to help individuals with Down’s syndrome receive health care tailored to their own specific needs.

Their early data show that this seems to provide useful guidance for caregivers and GPs.


 

Dr Shahid Zaman, who leads our research group, spoke about some of the important considerations to bear in mind when thinking about cognitive decline in the transition to Alzheimer’s disease.

Diagnosis can be difficult in people who have Down’s syndrome, so it is important to look at multiple measures and exclude other possible causes.
It was great to hear Dr Sigan Hartley talk about some of the findings that are coming out of the ABC-DS study.

Our site in Cambridge is one of many places internationally which is collecting data from people who have Down’s syndrome who are over 25 over different time points. This will help us understand what processes in the body predict cognitive decline, and therefore help us detect and intervene earlier.


 

We then heard about how researchers have been using brain scanning to identify how the brains of people who have Down’s syndrome are different to those without, and what changes we can see as people age throughout the lifespan.

Dr Abi Fukami from Kings College London showed that some differences in brain volume are in utero for people who have Down’s syndrome compared to those without. The type of changes may be associated with later difference in developmental outcomes. Dr Nancy Raitano Lee from the US shared data which showed that young people with Down’s syndrome tend to have a smaller surface area but thicker cortex, and more connectedness in their brains when using their short term memory, compared to those without.


 

Our first day has been very inspiring and prompted lots of discussion and reflection. We are very excited for the next few days, where we will hear more about the future directions of Down’s Syndrome research!

You can catch up the rest of our conference reports here:

If you are interested in hearing more about our research, resources for healthy brain ageing for people with Down’s Syndrome, or participating in one of our studies, please email our research team at: ciddrg@medschl.cam.ac.uk.

Click the image below to download our flyer.