Observational cohort studyAgeing in Prader-Willi syndrome; Gezond ouder worden met Prader-Willi syndroom.
Recruiting
- Conditions
- Prader-Willi syndrome
- Registration Number
- NL-OMON29605
- Lead Sponsor
- Gouverneur Kremers Centrum, UM/azM
- Brief Summary
/A
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Not specified
- Target Recruitment
- 100
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
Genetic investigations excluding Prader-Willi syndrome.
Study & Design
- Study Type
- Observational non invasive
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method 1. What is the age distribution in the population of people with PWS?;<br /><br>2. Which physical, behavioural, psychiatric conditions and skills manifest in adults with Prader-Willi syndrome?;<br /> <br>3. Which of these characteristics are age-related?;<br /><br>4. Which changes in physical, behavioural, psychiatric conditions and skills are present in adults with Prader-Willi syndrome; are these changes age-related?;<br /><br>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? <br>
- Secondary Outcome Measures
Name Time Method 1. What are the main causes of death in Prader-Willi syndrome? Are they age-specific?;<br /> <br>2. How can an adequate transition from paediatric to adult healthcare for persons with Prader-Willi syndrome be provided?<br>