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Note: This record shows only the 20 elements of the WHO Trial Registration Data Set. To view changes that have been made to the source record, or for additional information about this trial, click on the URL below to go to the source record in the primary register.
Register: Netherlands Trial Register
Last refreshed on: 30 April 2017
Main ID:  NTR1110
Date of registration: 31/10/2007
Prospective Registration: Yes
Primary sponsor: Gouverneur Kremers Centrum
Public title: Observational cohort study Ageing in Prader-Willi syndrome; Gezond ouder worden met Prader-Willi syndroom.
Scientific title: 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. - N/A
Date of first enrolment: 1/10/2007
Target sample size: 100
Recruitment status: recruiting
URL:  http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=1110
Study type:  observational
Study design:  Randomised: No; Masking: None; Control: Not applicable; Group: [default]; Type: Single arm  
Phase: 
Countries of recruitment
The Netherlands
Contacts
Name: L.M.G.   Curfs
Address:  Department of Clinical Genetics Maastricht University / Academic Hospital Maastricht P.O. Box 1475 6201 BL Maastricht The Netherlands
Telephone: +31 (43)3877850
Email: curfs@msm.nl
Affiliation: 
Name: M.  Sinnema
Address:  Department of clinical genetics Maastricht University / Academic Hospital Maastricht P.O. Box 5800 6202 AZ Maastricht The Netherlands
Telephone: +31 (43)3875797
Email: margje.sinnema@GEN.unimaas.nl
Affiliation: 
Key inclusion & exclusion 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: Genetic investigations excluding Prader-Willi syndrome.

Age minimum:
Age maximum:
Gender:
Health Condition(s) or Problem(s) studied

Prader-Willi syndrome

Intervention(s)
Observational study, no interventions.
Primary Outcome(s)
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 Outcome(s)
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?
Secondary ID(s)
incomplete
Source(s) of Monetary Support
Dutch Prader-Willi Fund
Secondary Sponsor(s)
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