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

Observational cohort study; Ageing in Prader-Willi syndrome; an observational cohort study on the physical, behavioural, psychiatric conditions and skills in adults with Prader-Willi syndrome.

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON29605

Enrollment

100

Registered

2007-10-31

Start date

2007-10-01

Completion date

Unknown

Last updated

2024-02-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Prader-Willi syndrome

Interventions

Observational study, no interventions.

Eligibility

Inclusion criteria

Inclusion criteria: 1. Clinical diagnosis of Prader-Willi syndrome (meeting consensus diagnostic criteria (Holm et al., 1993)); 2. At least 18 years of age.

Exclusion criteria

Exclusion criteria: Genetic investigations excluding Prader-Willi syndrome.

Design outcomes

Primary

Measure	Time frame
1. What is the age distribution in the population of people with PWS?; 2. Which physical, behavioural, psychiatric conditions and skills manifest in adults with Prader-Willi syndrome?; 3. Which of these characteristics are age-related?; 4. Which changes in physical, behavioural, psychiatric conditions and skills are present in adults with Prader-Willi syndrome; are these changes age-related?; 5. What is the demand for health-care in adults with PWS; are these age-related? Which changes in health-care demands can be expected?	—

Measure

Time frame

1. What is the age distribution in the population of people with PWS?; 2. Which physical, behavioural, psychiatric conditions and skills manifest in adults with Prader-Willi syndrome?; 3. Which of these characteristics are age-related?; 4. Which changes in physical, behavioural, psychiatric conditions and skills are present in adults with Prader-Willi syndrome; are these changes age-related?; 5. What is the demand for health-care in adults with PWS; are these age-related? Which changes in health-care demands can be expected?

—

Secondary

Measure	Time frame
1. What are the main causes of death in Prader-Willi syndrome? Are they age-specific?; 2. How can an adequate transition from paediatric to adult healthcare for persons with Prader-Willi syndrome be provided?	—

Contacts

Public ContactM. Sinnema

Department of clinical genetics Maastricht University / Academic Hospital Maastricht P.O. Box 5800

margje.sinnema@GEN.unimaas.nl+31 (43)3875797

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)