Formed in 2010, the Aim and Objectives of the Research Advisory Committee are as follows:
For PWSA UK to have an effective and far more professional research support capability that is strategic in its approach and able to embrace the views of parents in terms of priority focus for research.
We are pleased to let you know about a new initiative set up by the International PWS Organisation especially for those caring for an adult with PWS at home.
IPWSO Board member, Georgina Loughnan, who is heading the project, says, "We know that this can sometimes be difficult and that for living arrangements to work successfully there often have to be many compromises made by parents and other family members. The support of extended family members and friends is also most valuable to the well-being of the person with PWS and his or her parents. Where possible, community support can also play a significant and important role. Providing an appropriate environment for someone with PWS in all areas of their life will promote good health and longevity. If you have an older son or daughter - someone who has left school, but is still living at home - and need our help, please answer our questionnaire. Our FamCare team will do its best to come up with some supportive answers."
You can see the questionnaire and respond to it at http://www.ipwso.org/support/famcare/
Ian Stuart-Hamilton, who is carrying out research into adults with PWS, has sent us the following request::
"Are you the parent or carer of an adult with PWS? We'd really like you to take part in a new survey being jointly by members of University of Glamorgan and Ludlow Street Healthcare. The survey is not hard to fill in and most of it is concerned with whether particular aspects of behaviour have changed since the person with PWS was younger. The survey can be found at: https://www.surveymonkey.com/s/DYCW6B9
The data from the survey are completely confidential. However, at one point, the survey will ask for your name. This is simply to help with tracking data if there is a follow-up study. If you do not want to give your name, that is fine - just type 'ANON' in the box.
The study is about adults with PWS, and thus participants must be 18 years or older.
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
It is well known that the primary symptom of Prader-Willi Syndrome is hyperphagia (excessive appetite), with behavioural and emotional problems also common.
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
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.
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.