Research
PWSA UK has a research sub-committee that aims to secure funds and manage them in order to support PWS research and innovation.
The sub-committees purpose is to adopt an inclusive and strategic approach to identifying PWS research and innovation priority areas and overseeing the management structures for making it happen in terms of:
- considering the priorities of both families and researchers in choosing which research to support
- seeking and managing funding for research
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determining the most effective and efficient use of research funds
- enabling researchers to get in touch with families
- sending out questionnaires on behalf of researchers
- publicising research reports
Hyperphagia and Behavioural and Emotional Problems
Recent UK research - Investigating the Relationship Between Hyperphagia and Behavioural and Emotional Problems in Children with Prader-Willi Syndrome
Dr Lou Enright, Clinical Psychologist, Derbyshire Healthcare NHS Trust
Dr Martha Laxton-Kane, Clinical Psychologist, Chesterfield Royal Hospital Foundation Trust
Dr Roshan das Nair and Dr Shirley Thomas, University of Nottingham
Background
It is well known that the primary symptom of Prader-Willi Syndrome is hyperphagia (excessive appetite), with behavioural and emotional problems also common.
Recent UK Research - findings from behavioural studies of people with PWS
Cerebra Centre for Neurodevelopmental Disorders
Kate Woodcock is a Research Fellow at the Cerebra Centre for Neurodevelopmental Disorders, part of the School of Psychology at the University of Birmingham. Her research into behaviour in PWS includes repetitive behaviour, and attention-switching and resistance to change. To read her reports on this research, visit www.katewoodcock.com
Recent UK Research - The Under Fives Project
From the Cambridge team:
This research project was designed to investigate infancy and the transition from the early characteristics (phenotype) of PWS – floppy (hypotonic) baby with no interest in feeding – to the later phenotype – obsessive interest in food as expressed in conversation, play, reading matter, or by active foraging. Previous research, based on retrospective data about people with PWS ranging in age from a few months to 47 years, had found that a high proportion of mothers had had problems in pregnancy and/or in the birth process and there had been difficulties with the newborn babies.
The health and well-being of people with a neurodevelopmental disorder
Recent UK research - The lifelong health and well-being of people with a neurodevelopmental disorder
From the Cambridge Intellectual and Developmental Disabilities Research Group (CIDDRG)
In 2009, we started a brief research project funded by the UK Lifelong Health and Wellbeing Cross-Research Council Programme. In this study, we wanted to learn more about how genetic knowledge might be used to improve the health and social care of adults with a neurodevelopmental syndrome associated with an intellectual disability. The initial hope was that this pilot work might lead to a more extensive funded study but this was not the case.
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