Research

 

PWSA UK Research Advisory Committee (RAC)

Formed in 2010, the Aim and Objectives of the Research Advisory Committee are as follows:

 
Aim

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.

 

Objectives
  • To set a research and innovation agenda, taking into account worldwide research and innovation programmes.
  • To consider the priorities of both families and researchers.
  • To provide transparency to all involved as to the process and expectations of the research outcomes.
  • To seek funding to support its objectives via fundraising, grant applications, corporate sponsorship, matched funding and leverage opportunities.
  • To determine the most effective and efficient use of research funds.
  • To account for and manage the funds.
  • To identify ways of making scientific outcomes more relevant to the experience of families.
  • To fund ways in which outcomes of scientific research are disseminated to professionals working with PWS, as well as the families themselves.
  • To progress the implementation of the European Clinical Database for people with PWS.
  • To agree research and innovation bidding criteria, grant making procedures and processes.

 

From research into practice

Cerebra Centre

 

Building accessible online resources for families and professionals ...
 
From research to practice: The Cerebra Centre for Neurodevelopmental Disorders (CNDD) opened at the University of Birmingham in 2008. Prof Chris Oliver, who oversees the Centre, has over 20 years of experience of working with individuals with genetic syndromes and their families. They believe that it currently takes far too long for academic research findings to reach the individuals, families, professionals and communities who need this information quickly and efficiently. 
 
Over the next 18 months a team at the Cerebra Centre will be building new online and cloud resources which they hope will reduce this delay and help families, carers and professionals to access the information they need, whenever and wherever they need. Six different genetic syndromes will be featured initially, one of which is Prader-Willi Syndrome. 
 
Cerebra Centre are keen to involve people in this project, either by talking to people about their experience of existing online resources, or about their experience of living with a rare syndrome. They will also be contacting people who have previously taken part in their research studies to ask for their help. 
 
To see more information about this exciting new project, click here.

Looking After a Child with an Intellectual Disability? Parents, it’s time for your voices to be heard!

 

From Prof. Chris Oliver’s Team - University of Birmingham

 

Researchers at the University of Birmingham are starting two new research projects with families that have taken part in previous research studies.  It is hoped these projects will capture the lived experiences of these families.
 
When you think of a researcher what image comes to mind? Is it the stalked neck academic crunching numbers or figures, or is it the Professor boffin pouring over his dusty volumes of long lost research?  How close do researchers come to capturing people’s everyday experiences of caring for children with intellectual disabilities?
 
At the Cerebra Centre for Neurodevelopmental disorders (University of Birmingham) we have always been concerned about the views of parents of children with intellectual disabilities when forming our research questions.  Hopefully, if you have taken part in these projects you have found them useful.  
 
Despite this, there still seems to be a gap between those initial rich and complex conversations with parents that inspire our research and the facts and figures that get published in research journals – somewhere the human element gets a little lost.  To some degree this is to be expected but ultimately we need to focus on what actually inspires policy change.  What makes services stand up and listen?  Facts go a long way but can they ever match up to people’s stories about their experiences – stories about their children’s needs, parents’ perceptions of these needs and the services they may go on to access?  We feel that these stories are powerful and that they can make a real difference when appealing to services, professionals and other researchers to step back and then make changes.
 
Children with intellectual disabilities have complex needs and a vast proportion of families caring for these children will experience difficulties for which they need support.  Researchers now know quite a lot about the needs of children with intellectual disabilities, however, very little is currently known about how caring for a child with an intellectual disability affects parents and carers and about the quality of support they are receiving from services.  
 
It is time to close that gap between parents’ lived experiences and published research.   We are beginning two new research projects with families who have already taken part in our research studies; therefore, we will be joining two powerful forces: your voices and our facts and figures.  This way we can make an even bigger difference to children with intellectual disabilities and their families.  
 
If you have previously taken part in our studies we need your help so please keep an eye out for our questionnaire and interviews looking at children’s characteristics and needs, challenging behaviour, your thoughts and feelings and service provision.   Letters or emails inviting you to take part in this research will be sent to you from September 2012.  It is the time to have your say!
 
If you have any further questions or would like to request further information about this new area of research please do not hesitate to get in touch.
 
Email: Dr Jane Waite - This e-mail address is being protected from spambots. You need JavaScript enabled to view it.       Telephone: 01214147206
 

Opportunity to take part in research - caring for an adult with PWS in the family home

FAMCARE - A new initiative from the International PWS Organisation (IPWSO) for those caring for an adult with PWS at home - survey questionnaire

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/

Opportunity to take part in research - behaviour changes in adults

Research into adults with PWS by the University of Glamorgan and Ludlow St Healthcare

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.


This is the first in what is hoped will be a series of studies. If you are interested in taking part in these, please contact me, Ian Stuart-Hamilton, Professor of Developmental Psychology at the following email address: This e-mail address is being protected from spambots. You need JavaScript enabled to view it. .  I will be more than happy to answer any queries you may have. One other thing - if you express an interest and then at a later date decide that you don't want to take part, then don't worry, we're not like telesales! We will NEVER pester you to take part if you say no to an invitation.

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.

Read more...

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. 

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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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