Study design with responsible return of results for a fully remote genome sequencing study in individuals with Prader-Willi syndrome

Prader-Willi syndrome (PWS) is a complex neurodevelopmental genetic disorder affecting multiple systems. We describe the design and feasibility of a fully remote, patient group-led, genome sequencing (GS) study that will evaluate the impact of genetic variants on the frequency and severity of PWS clinical symptoms, with responsible return of results.