ADVICE NEEDED FROM POTENTIAL RESEARCH PARTICIPANTS – UNIVERSITY OF CAMBRIDGE

PWS researchers at the University of Cambridge need you! This proposed new project is part of research aimed at better understanding the behavioural and mental health needs of children and adults with PWS. We are seeking help from children, adolescents and adults with PWS aged between 12 and 50 years. This project is at an early stage but the researchers would like to make you aware of the project and hear from you if you are interested. Jennifer Noh and Professor Tony Holland at the University of Cambridge are submitting the project for full ethical approval and once the project is approved we will then be recruiting participants for this new research study. The study aims to develop a novel method to monitor challenging behaviours and other health conditions that specifically affect people with PWS.

WHAT ARE THEY DOING?

They will collaborate with researchers in other departments and the industry to develop and evaluate an innovative clinical assessment system. This system uses the smartphone app and smartwatches to collect and analyse different kinds of health data, such as heart rate, activity level, sleep, challenging behaviour, and mood.

WHY ARE THEY DOING THIS RESEARCH?

Finding connections between physiological, behavioural and mental changes can inform us about possible reasons for and markers of behavioural problems and psychiatric symptoms. Such signatures might enable carers and clinicians to better understand the contributors to, or antecedents of, these problems. Eventually, such findings can help with the development of better prevention and intervention strategies.

HOW CAN YOU HELP?

We anticipate that the main study once it has received ethical approval will require one or two setting-up meetings near you or, if you prefer, at the University of Cambridge. During the meetings, researchers will temporarily install the daily-assessment app on your mobile phone (for both people with PWS and the carers), and participants with PWS will receive a health-tracking smartwatch. After the set-up, participants are asked to casually wear the smartwatch (only for participants with PWS) and to answer the quick daily-assessment questionnaire once per day during the course of the study. The research team will cover all expenses.

If you are interested in taking part in their research, please email Jennifer Noh on jmn52@medschl.cam.ac.uk