No registrations found.
ID
Source
Health condition
Quality of Life
Patient Reported Outcome Measure
Cleft patients
Sponsors and support
Intervention
Outcome measures
Primary outcome
Outcome of the study: An internationally validated PROM for use by patients with cleft lip and/or palate.
Secondary outcome
not applicable
Background summary
So far outcomes in cleft treatment have mainly been measured in objective and biomedical outcomes. Patient perspectives are often overlooked, because an appropriate, well-defined, valid, reliable and responsive Patient Reported Outcome measurement tool is not available. An international team of experts from Candada, USA and UK has taken up the challenge and is developing this PRO instrument, called the CLEFT-Q. The cleft team in the UMCG/MCL will take part in field testing the CLEFT-Q
Study design
not applicable
Intervention
Subjects will fill in a Patient reported outcome measure
Inclusion criteria
* Children/adolescents with CL, CP, CLP between 6 and 29 years of age.
* Who gave written informed consent (and/or their parents in case of minors)
* who are under treatment in our centres or
* who had treatment in our centres in the past:
Exclusion criteria
* Children with a cognitive disability and/or who cannot read.
* Children who do not understand/speak Dutch.
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| NTR-new | NL4794 |
| NTR-old | NTR4934 |
| CCMO | NL 51730 |