Crouzon Syndrome Crouzon Syndrome
Conditions
Interventions
The intervention under research is the Cognitive Orientation to daily Occupational Performance (CO-OP) method, developed by Mandich &
Polatajko (2004). CO-OP is a goal-oriented behavioral therapy that focuses on improving motor skills through a structured method called Goal-Plan-Do-Check (GPDC). Children set personalized goals for m
Sponsors
Erasmus MC, Universitair Medisch Centrum Rotterdam
Eligibility
Age
2 Years to 17 Years
Inclusion criteria
Inclusion criteria: To be eligible to participate in this study, a participant must meet all of the following criteria: 1. Aged 5 through 18 years old. 2. Genetically confirmed diagnosis of Crouzon Syndrome. 3. Motor difficulties as identified through the Movement Assessment Battery for Children, second edition (P = 16th percentile).
Exclusion criteria
Exclusion criteria: A potential participant who meets any of the following criteria will be excluded from participation in this study: 1. Severe intellectual disability (IQ < 70), as participation in the intervention and following up trainings instructions is not feasible. 2. Planned craniofacial surgery within 12 months or those who are medically unstable during the study period.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary study parameter is feasibility of the CO-OP intervention, including recruitment and retention rates, completion of intervention sessions, adherence, home practice, acceptability, participant and caregiver experiences, and fidelity of intervention delivery. | — |
Secondary
| Measure | Time frame |
|---|---|
| Preliminary effectiveness will be explored using repeated outcome measurements across study phases. Outcomes include the Canadian Occupational Performance Measure (COPM) to assess perceived performance and satisfaction with self-selected daily activities; the Movement Assessment Battery for Children–Second Edition (MABC-2) to assess motor skills; the Performance Quality Rating Scale (PQRS) to assess movement quality during functional tasks; and the Self-Perception Profile for Children/Adolescents (SPPC/SPPA) to assess self-perception. Changes in outcome trajectories between baseline and intervention phases will be explored. | — |
Countries
Netherlands
Contacts
Public ContactMGCC Drunen
Erasmus MC, Universitair Medisch Centrum Rotterdam
Outcome results
None listed