February 2022: To date 31 families have completed the first stage of our PWS research study.  A big thank you to all those families.  The information that you are sharing with us about your PWS family members is invaluable to our research.  We have recently finished analysing the data from the PWS caregivers and healthcare professionals focus group sessions which we held before Christmas.  We are currently writing up the results of that analysis.  Those results will help us structure the second stage of our study, the research lab visit, in a way that is both enjoyable and considerate of the individual needs of your PWS family members.

Before we end study recruitment in May, we are hoping to recruit a further 10-15 families with children, adolescents, or adults with PWS to increase our sample size.  Larger sample sizes provide more accurate data and increase how reliable the results are.  Recent studies looking at eye-tracking and EEG in PWS have had sample sizes of 39 in France and 42 in the USA. If we could increase our sample size to 46, it means the research coming from Ireland holds the same weight as research coming from bigger countries.

For families who might be interested in participating in our research, this is what it entails.

Stage 1: One or both parents of the person with PWS will meet with a researcher on our team for two interviews via a Zoom video call.  Parents will be asked a variety of questions about their family member with PWS to help us understand all about their child’s behaviour and development.

Stage 2: We will organise with parents for the person with PWS to visit us in our research lab at St. James’ Hospital, Dublin.  Using a small camera, we will trace the eye movements of the person with PWS while they look at pictures and film clips on a computer screen.  We will also record their brain waves through an EEG.  This is a safe and non-invasive procedure.  We hope to facilitate any families that would prefer stage 2 to be conducted in their homes rather than in our research lab at St. James’s Hospital, Dublin. 

To contact the team please email recruitmentNRG@tcd.ie 

Reminder: Any child or adult with a confirmed diagnosis of PWS who would like to take part must be over the age of three.