2 April 2016

National Quality Registry for Follow-up of Persons with Cerebral Palsy (CPUP)

  • 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.

Population

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

3,273 people.

Volume over the past operating year

3,273 people (all people monitored regularly).

Coverage rate

95 percent.

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.

Category: Paediatrics, obstetrics and gynaecology

Certification level: 1

Read more

Hjälpte informationen på sidan dig?


User information

Tack för att du hjälper oss!