Welcome to the BINGO study!

If you are interested in taking part in the project, or would like some more information, please complete the form below, or send an email to bingo@mrc-cbu.cam.ac.uk

About us:

• BINGO stands for Brain and Behaviour in Intellectual Disability of known Genetic Origin.

• BINGO is a research study involving researchers from the MRC Cognition and Brain Sciences Unit (CBU) at the University of Cambridge, and the University of Oxford.

• We are interested in the different ways that genes can affect the brain and behaviour: we would like to understand the different problems that this can cause for people with intellectual disabilities (ID), learning difficulties, or developmental delay.

Please read on to find out more information about what the study involves. If you would like to register your interest in taking part, please fill in the form below and a member of the project team will get in touch with you. Alternatively, you can contact our team directly using the information in the “Contact details” section. 

What is the purpose of this study?

This study brings together developments in genetics, psychology and brain sciences, to find out how specific gene differences affect individuals with ID. We want to find out much more about how the brain develops and functions differently in individuals with ID, where a possible genetic cause has been found. We are also interested in creating new assessment methods, which are suitable for people with ID. In the future, the information we gather might make it easier to support people with ID, because we will have a better understanding of which specific patterns of difficulty are associated with each cause.

Who can take part?

At the moment, we would like to hear from families of people, aged 3 and above, with a neurodevelopmental disorder (including autism, ADHD, intellectual disability, epilepsy and more) caused by variants in any of the following genes:

What does participation in the study involve?

The project involves several different research activities:

Activity 1: Parent / carer questionnaires

First, we will ask you to fill in some questionnaires about your family member. You can complete these using pen and paper (we will send these to you by post) or online, according to your preference. If you choose to complete the questionnaires online, we will talk through the procedure beforehand over the telephone. This activity typically lasts about one and a half hours.

Additional activities (currently paused due to COVID-19):

Depending on each participant’s particular genetic diagnosis, their age, and the types of difficulties they have experienced, we may contact you with information about other research activities currently on offer.

These sometimes involve a member of the project team visiting you at home, to collect more detailed information via interviews, structured observations and computer-based puzzles.

We may also offer to organise an MRI (magnetic resonance imaging) brain scan and MEG (magnetoencephalography) assessment. These activities take place at the MRC CBU in Cambridge. We will arrange transport (and if needed, accommodation) for your family member and an accompanying adult.

For more detailed information about the study, please download our study information sheet.

Register your interest

If you and your family would like more information about the BINGO study, or to register your interest in taking part, please either email bingo@mrc-cbu.cam.ac.uk directly, or complete the following form. By sending us a message you are not committing to taking part. 

(Items marked with an asterisk are mandatory)

Contact details

You may have some questions and we would be very happy to discuss these with you. If you wish to discuss this study you can contact our team using the details below:

Dr Kate Baker

Email: bingo@mrc-cbu.cam.ac.uk

Family Resources

We are pleased to announce that we are collaborating with Unique, a charity (registration no. 1110661) that aims to inform, support and alleviate isolation of people and families affected by rare chromosomal or single gene disorders and to increase public awareness.

The organisation has a global network of families, and provide practical guides and packs for members as well as links to local groups.

Please visit their website: https://rarechromo.org/ to find out more and become a member. 

The BINGO team: