- Registry Manager: Region Skåne
- Registry Centre - affiliation: Registry Centre Syd
- Start year: 2005
- Classifications used: GMFCS (Gross Motor Function Classification System), MACS (Manual Ability Classification System), CFCS (Communication Function Classification System)
- This registry contains data on: Pharmaceuticals, Diagnoses, Intervention, Inpatient Care, Specialized Outpatient Care, PROM or other patient-reported health effects, Risk Factors, Follow-up Data 12 months or later after the case is registered in the registry
Description of registry
CPUP monitors the results of continuous treatment interventions from infancy to adulthood. The person’s physiotherapist and occupational therapist report information regularly, and hips and spine are monitored through X-ray examinations. Operations, spasticity-reducing treatments, orthotics, etc. are registered.
People with cerebral palsy in Sweden. The registry is also used in Norway, Denmark, Iceland, Scotland and New South Wales.
Ages in the registry
All. Until 2011, CPUP only included children 0-18 years of age, but now also includes adults with CP.
Total volume of registry
Volume over the past operating year
3,273 people (all people monitored regularly).
References on validations
- Gudmundsson C. Nordmark E. The agreement between GMFCS and GMFCS-E&R in children with cerebral palsy. Accepted for publication in European Journal of Physiotherapy (Accepted).
- Rodby-Bousquet E, Agústsson A, Jónsdóttir G, Czuba T, Johansson AC, Hägglund G. Interrater reliability and construct validity of the Posture and Postural Ability Scale in adults with cerebral palsy in supine, prone, sitting and standing positions. Clin Rehabil. 2013 (Accepted)
- Westbom L, Hägglund G, Nordmark E. Cerebral Palsy in a total population 4-11 years old in southern Sweden. Prevalence and distribution according to different CP classification systems. BMC Pediatrics. 2007, 5;7(1):41.
Delhusen Carnahan K, Arner M, Hägglund G. Association between gross motor function (GMFCS) and manual ability (MACS) in children with cerebral palsy. A population-based study of 359 children. BMC Musculoskeletal Disorders. 2007;8:50.
Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.