About Down's Syndrome : Cognitive, Genetic and Cellular Study of Alzheimer’s Disease in Down’s syndrome (London Down Syndrome Consortium)

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London Down Syndrome Consortium

We are looking for people with Down syndrome of all abilities and ages to take part in our study.

People with Down syndrome differ in their abilities. We are investigating how abilities such as memory and attention differ among people with Down syndrome, and possible reasons for these differences. We are also looking for differences in the way these abilities develop in babies and children with Down syndrome. We will also look into why some people with Down syndrome develop Alzheimer’s disease as they get older, and others do not. The results of the study will hopefully improve the care and treatment of people with Down syndrome, and may also help to develop new treatments for Alzheimer’s disease.

Individuals aged 16 and over will be seen by the UCL study team. Participants will be asked to complete various tests (like games). We will also ask a relative or carer to complete questionnaires about the individual. We are also asking participants for a saliva sample, a blood sample and a hair sample so that we can look for differences in the genes people have and in the way individuals’ cells grow. People can still take part in the study if they do not want to provide these samples – they can do as much or as little as they wish. We will see people at a time and place that is convenient for them – this could be at their home or at our testing rooms in London. We will reimburse any travel expenses for participants and their carers, and we will give participants a small gift to say thank you for their help.

Individuals aged under 16 will be seen by the Birkbeck study team. Participants and their parents will be asked to complete various tasks. Participants will watch pictures on a computer, and using a special camera the study team will see what the baby is looking at. The study team will also look at the brain activity of participants. The team will also conduct table top assessments to understand motor, language and visual ability of participants. Parents will also be asked to complete questionnaires about their child. We are also collecting saliva samples from infants and children to understand more about genetic variation within our participants. We are seeing infants and children in our testing rooms in London, and will reimburse travel expenses (plus hotel costs if people are travelling a long way).

For more information please visit our website: www.ucl.ac.uk/londowns

If you have any questions or would like to take part please contact us at:

Carla at downsyndrome@ucl.ac.uk or 020 7679 9314 for participants aged 16 and over
Kate at khughe05@mail.bbk.ac.uk or 07427666022 for participants aged 4-16
Esha at e.massand@bbk.ac.uk for participants aged 6 months – 5 years ‘

Download: UCL Letter to Potential Participants Easy Read (Cognitive Study)

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