DELINEATE Study

Many individuals living with rare conditions struggle with neurodevelopmental issues, however very few studies have investigated these issues in the rare conditions community in great detail. This impacts the level of care and support that we can offer to affected individuals and their families.

We are running a study with our colleagues based at the University of Manchester to learn more about the cognitive, behavioural, emotional, and social functioning of people who are affected by certain rare developmental genetic conditions.

We are looking for people living with certain rare developmental genetic conditions to complete a neuropsychological assessment and review of their medical history. You will be asked to complete some simple assessments (puzzles and tasks). More information about these assessments can be found in the information sheet provided for download.

For more information, download the patient sheets through the links below:

ADULT PARTICIPANTS

PARENTS & GUARDIANS

If you are interested in taking part please contact: Aoife O’Sullivan at aoife.osullivan@postgrad.manchester.ac.uk (PhD Student under the supervision of Dr Rebecca Bromley and Professor Siddharth Banka at The University of Manchester) or complete the form below:

Name(Required)

Study Team

Rebecca Bromley

Rebecca Bromley

Paediatric Neuropsychologist

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Aoife O’Sullivan

Aoife O’Sullivan

PhD Student

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Siddharth Banka

Siddharth Banka

University of Manchester

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