Psychological characteristics in genetic overgrowth disorders
Research type
Research Study
Full title
Psychological characteristics in genetic overgrowth disorders
IRAS ID
218194
Contact name
Chris Oliver
Contact email
Duration of Study in the UK
1 years, 6 months, 5 days
Research summary
Overgrowth disorders are a group of rare genetic conditions that cause children to be larger than others of the same age. They are associated with a wide spectrum of atypicalities including intellectual disability. \n\nLittle is known of the behavioural features associated with most genetic overgrowth disorders, including common and unique features of different disorders. Possible psychological difficulties include Attention Deficit Hyperactivity Disorder, Autism Spectrum Disorder, social difficulties, problems with sleep, anxiety, depression and psychosis. This project will evaluate the clinical psychological profile of overgrowth disorders, and put them into context alongside genetic mutations, cognitive ability, and physical features. Service use and quality of life will also be examined. This knowledge could benefit people with overgrowth disorders and their families, and support service development of the most effective treatments and interventions.\n\nThe study will be cross-sectional. Participants with a diagnosed overgrowth disorder will be recruited via the Clinical Genetics department of Birmingham Women’s Hospital. A combination of measures will be utilised depending on the age and ability of the participant to evaluate the psychological characteristics/behaviours listed above. A proportion of these measures will be completed by the participant and/or a parent or caregiver at their own convenience, and the remaining proportion will be conducted over the telephone or with the research team at a location and time of the participant and/or parent/caregiver’s preference. This is likely to be either the Cerebra Centre at the University of Birmingham or the participant’s home.
REC name
Wales REC 3
REC reference
17/WA/0179
Date of REC Opinion
28 Jul 2017
REC opinion
Further Information Favourable Opinion