Observational cohort study
Ageing in Prader-Willi syndrome;
Gezond ouder worden met Prader-Willi syndroom.

Rationale: Different life stages in persons with Prader-Willi syndrome know different features. PWS is characterized by severe hypotonia and feeding problems in early infancy. In later childhood and adolescence this is followed by hyperphagia and, without any dietary instructions, extreme obesity. Little is known about the ageing process in PWS. Morbidity and mortality are high in adulthood. Because of typical Prader-Willi characteristics, like high pain threshold, decreased propensity to vomit and different temperature sensitivity, severe illnesses might only be recognized in advanced stages. Consequently there is a need for preventive management.
Objective: Aim of the study is to describe the full range of characteristics in adults with Prader-Willi syndrome. These data serve as baseline information for further longitudinal research to the ageing process in PWS. The information will be used to adjust guidelines for preventive management, which can serve as basis for health monitoring.

Study design: Observational cohort study, to start with cross-sectional data. Follow up of this cohort will take place in the future.
Study population: The study population consists of as many as possible adults (18+) with a clinical diagnosis of Prader-Willi syndrome in the Netherlands.
Main study parameters/endpoints: The full range of characteristics of adults with Prader-Willi syndrome will be described. This will include physical, behavioural, psychiatric conditions as well as skills. It will be studied to what extent these characteristics are age-specific.

incomplete

N/A

Observational study, no interventions.