What’s happening in Ireland?
Research on PWS is taking place all the time. Here are some studies for which Research Participants are being sought in Ireland.
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TASTER: Training Attention Switching for Temper Episode Reduction. Dr Kate Woodcock and her team at Queen’s University Belfast are now starting the second phase of their TASTER study (Training Attention Switching for Temper Episode Reduction). During the first phase of the study, they have developed a full prototype of the first ever video game tailored specifically to train task switching in children with PWS. Task switching is a brain process that we know individuals with PWS find difficult. Task switching difficulties are linked to the challenges that individuals with PWS experience when things change in their routines, plans or expectations. The aim of the TASTER project is to design a way to improve individuals’ task switching ability, and so ultimately reduce the challenge experienced by individuals with PWS when things change, and help individuals to show fewer temper outbursts that follow change.
The research team has built the current prototype game in collaboration with a small group of children with PWS and their families because that allows them to be sure that the game meets individuals’ needs. The team have shown that even a short period of play with our current prototype game can improve cognitive skill in task switching. Now, the aim of the second phase of the TASTER project aim is to greatly improve the game so that it:
- Is suitable for a wide range of individuals with PWS, both children and adults
- It is exciting and motivating for all players so that they are eager to play regularly over several weeks (because this is the level of engagement that we know from research with other populations of individuals, can have a positive impact on behaviour)
The team is looking for families who would like to be involved in this exciting phase of the study. Individuals with PWS can be any age providing they are at least 6 years old by June 2017. Individuals with PWS must also have access to a tablet computer (or similar such as a smart telephone) to play the game on and an internet connection. Finally, individuals with PWS must be happy enough to play the current prototype of our game for several minutes. Participation can take place from family’s homes and can be very flexible to fit in with families’ busy lives.
You download a TASTER study information sheet here.
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A Population-Based Profile of Prader-Willi Syndrome in Ireland. In February 2016 PWSAI, in conjunction with Prof. Louise Gallagher and Prof. Edna Roche, both from TCD and Tallaght Hospital, launched a major study aimed at assessing the needs of people with people with PWS and their families in Ireland today. To find out more about the study contact Sarah Feighan on 01 8962315 or firstname.lastname@example.org
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Recently Completed Studies
Significant PWS Research previously conducted in Ireland includes:
- Mental Health Problems in Children with Prader-Willi Syndrome. This research was led by Dr. Norbert Skokauskas and you can access the article based at: http://www.cacap-acpea.org/uploads/documents//Prader_Willi_Skokauskas_Aug_2012.pdf
- Educating Students with Prader-Willi Syndrome. This research was conducted by Dr. Colin Reilly and you can access an article based on it at: https://pwsaireland.files.wordpress.com/2013/01/colin-reilly-article.pdf
- There has been ongoing research by the Paediatric Endocrinology Team at the National Children’s Hospital, including by Prof. Hilary Hoey, Prof. Edna Roche and Dr. Judith Meehan. This work includes the first Irish national study of children with Prader-Willi Syndrome. A selection of research publications from this group includes:
- New Approaches in Prader-Willi Management. Accessible at: https://www.icgp.ie/assets/44/F744A9A1-19B9-E185-83B79889F71A73F0_document/Article_3.pdf
- A Comprehensive Study of Irish Children with Prader-Willi Syndrome ages 2-14 years. This is not available for free online, but this has been published in the International Journal of Paediatric Obesity, 5, (1), 2010, p. 60.
- Sleep abnormalities in children with Prader-Willi Syndrome. Not available online, but has been published in the papers of the European Society for Paediatric Endocrinology Scientfiic Meeting, 2005.
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What’s happening internationally?
Two organisations that play a major role in promoting PWS research internationally are the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO). You can keep up to date with their work via their websites and Facebook pages:
Other useful means of following developments in PWS Research are:
- PubMed: A free resource that provides access to over 22 million citations for biomedical literature. It grants access to abstracts (summaries) of publications as well as many complete publications. Enter “Prader-Willi Syndrome” (or whatever you are interested in, e.g., “growth hormone”, “hyperphagia”, etc.) in the search field to find relevant material. You can access PubMed at: http://www.ncbi.nlm.nih.gov/pubmed or simply click here to immediately produce PubMed search results for PWS