Take part in a study to understand the genetics of dementia

What the study involves

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Scientists at University College London are looking for people living anywhere in the UK to take part in a study investigating the genetics of dementia. This study is part of the 100,000 Genomes project run by Genomics England and will carry out in-depth analyses of the entire genetic makeup of people who have or may be at risk of dementia. 

Who can take part

The scientists are inviting people who have young onset dementia or a family history of dementia to take part. The study involves talking to a research nurse to answer some clinical questions and giving a blood sample. The blood sample can be taken by a GP or community nurse and sent to the research team, and the research nurse can contact people by telephone, so you don't have to be based in London to take part.

The scientists are looking for two groups of people:

1.    People who have a diagnosis of dementia, and have a young onset, with symptoms that started before the age of 60.

2.    People who have a diagnosis of dementia and have a first degree relative (parent, brother or sister) or second degree relative (grandparent, aunt, uncle or half-sibling) with the same type of dementia.

This study is looking for new genes that could influence dementia, so they are not looking for people who already have an identified genetic cause in the family (for example APP, PSEN1 or PSEN2 for Alzheimer's disease, or MAPT, GRN or C9ORF72 for frontotemporal dementia).

Involving your relatives

If you fit in either of those groups, it would also be very helpful if one or two of your relatives could take part. This can be a first degree relative or a second degree relative. They don't necessarily have to live in the UK. The relative can be someone who has dementia, or someone that doesn't have dementia, but they must be older than the age at which the person with dementia was diagnosed.

How to get involved

If you would be interested in taking part in the study email Dementia.100k@uclh.nhs.uk for more information.

What will we achieve?

By analysing a large number of genes from many different people, the 100,000 Genomes study will allow researchers to gain a greater understanding of the genes that lie behind different types of dementia, and other conditions. The data will be made available to researchers across the country so that many different teams can use the high-quality samples in their research. 

When we have a clearer picture of which genes contribute towards the development of dementia, we will be able to better identify who is most at risk. Understanding the genetic basis of a disease will also allow researchers to investigate molecular pathways related to these gene changes and identify potential targets for future treatments.