JUNE 2021 – The International PWS Clinical Trials Consortium have produced consensus definitions and descriptions of the key behavioural features of PWS, with the aim of providing standardised measures for treatment studies. FPWR have produced the infographic to the right which summarises the 6 definitions (a useful resource to print.)
This consensus paper was produced because the lack of consensus in the field regarding how to best define and measure the complex behavioural features of PWS is often a limiting factor for studies. The full paper provides a unified understanding of the complex PWS behavioural phenotype through definitions and detailed descriptions, plus patient vignettes illustrating the interrelatedness and impact of the behaviours. Each definition is followed by a description, observable features, and information on assessing the behaviour. The paper concludes with patient vignettes to highlight the behavioural features discussed in the paper.
The paper was written by 14 well-known international experts: Lauren Schwartz, Theresa Strong, Elisabeth Dykens, Prof Tony Holland, Lauren Rice, Elizabeth Roof, Jessica Duis, Prof Stewart Einfeld, Prof Louise Gallagher, Kate Woodcock, Assumpta Caixàs, Anastasia Dimitropoulos, Parisa Salehi and Bonnie Taylor.