ID
Bron
Aandoening
Quality of Life
Patient Reported Outcome Measure
Cleft patients
Ondersteuning
Onderzoeksproduct en/of interventie
Uitkomstmaten
Primaire uitkomstmaten
Outcome of the study: An internationally validated PROM for use by patients with cleft lip and/or palate.
Achtergrond van het onderzoek
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
Onderzoeksopzet
not applicable
Onderzoeksproduct en/of interventie
Subjects will fill in a Patient reported outcome measure
Publiek
Wetenschappelijk
Belangrijkste voorwaarden om deel te mogen nemen (Inclusiecriteria)
* 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:
Belangrijkste redenen om niet deel te kunnen nemen (Exclusiecriteria)
* Children with a cognitive disability and/or who cannot read.
* Children who do not understand/speak Dutch.
Opzet
Deelname
Opgevolgd door onderstaande (mogelijk meer actuele) registratie
Geen registraties gevonden.
Andere (mogelijk minder actuele) registraties in dit register
Geen registraties gevonden.
In overige registers
| Register | ID |
|---|---|
| NTR-new | NL4794 |
| NTR-old | NTR4934 |
| CCMO | NL 51730 |