Netherlands CP register for children with cerebral palsy
An innovative approach for personalized care with patient participation
Much is still unknown about the optimal treatment in children with cerebral palsy. With the Netherlands CP register, running since 2020, we combine a follow up register/program and a treatment register. We collect data from health care practitioners and children with CP and their parents in ten rehabilitation centers, including Rijndam Rehabilitation and Erasmus MC.
Objectives of the CP Register are: 1) Prevention of secondary problems of CP, 2) Personalized care, and 3) Meaningful care.
With Patient Reported Outcome Measures (PROMs) and clinician reported outcomes we evaluate treatment trajectories in children with CP, and we follow them up to timely prevent secondary problems. We provide feedback on these outcomes through a patient portal, and use the results to support shared goal setting.
The Netherlands CP Register has been developed in a unique collaboration between children with CP, their parents, researchers and health care practitioners. Patient participation was integrated from the start of the project. PROMs are used in making treatment decisions and for evaluation of treatment.
ProjectCollaborators
Marij Roebroeck
Annelies Plaisier
Jasmijn van Bemmel
Period
1-1-2020 / ongoing
Clinical focus area
pediatric rehabilitation
