Vi bruger cookies til statistik som en del af vores arbejde for at lave en god hjemmeside. Medmindre du siger "nej tak til cookies", antager vi, at du accepterer vores cookie-politik. For mere information, se vores "cookie-politik".

Du kan også klikke "ja tak til cookies" for at  acceptere vores cookie-politik

DATA PRESENTATION

The Danish Cerebral Palsy Follow-up Program

DATABASE

Primary variables


Age

Cerebral paresis diagnosis

CPR No.

Date of birth

Gender

Gross motor function (Gross Motor Function Classification System)

Hand function ( Manual Ability Classification System)

Hip luxation

HIP X-ray

Municipality of residence

Paraclinical examination

Radiological examination

Introduction

The Danish Cerebral Palsy Follow-up Program (CPOP) is a clinical quality database for children and adolescents with cerebral paresis or cerebral paresis-like conditions. The overall aim of CPOP is to monitor and follow the quality of healthcare services and follow-up and to limit and/or prevent secondary sequela.

The database served as a regional clinical quality database in Region Southern Denmark between 2010-2013 and is now being established as a national clinical quality database. Data comes from the country's paediatric and paediatric orthopaedic surgical departments and from physiotherapists and ergotherapists employed in regional, municipal and private organisations.

More details

Abbreviation
CPOP
Type
Nationwide clinical quality database
Purpose
Scientific Research

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of children and adolescents between 0-15 years-old diagnosed with cerebral paresis and children between 0-5 years with cerebral paresis-like symptoms
Database Categories

Application requirements

The Regional Clinical Quality Databases

Data about clinical quality are collected with the purpose of monitoring and raising the quality of patient treatment in the Danish health-care system. These data can, as well as all other public registers, be made accessible for research projects based on systematic protocols and approved according to the relevant legislations.

Applying for access to data from a regional clinical database requires a list of demands to be obtained. A project description should be attached containing a description of the project explaining the rationale, purpose, methods, budget, publication plan etc.

Furthermore, The Danish Data Protection Agency must approve the project.

Application process

  • Apply via research access (Danish: forskeradgang), an online application system
  • Submit the protocol to The Danish Clinical Registries (RKKP)
  • RKKP registers the application
  • The application is forwarded to the relevant clinical database
  • Potential dialog about adjustment to the protocol
  • Approval and extradition of data (expected 6 months after application)

 

Legislation

The Regional clinical quality databases subject to rules for treatment of personal data, that should secure high quality of patient treatment in Denmark. These legislations include The Act on Processing of Personal Data (Danish: Persondataloven) and The Danish Act of Health (Danish: Sundhedloven). These legislations ensure that data access is limited to relevant purposes.

Contact information

Data owner
The Capital Region of Denmark
Contact data owner
Regionsgården 
Kongens vænge 2
3400 Hillerød
Website - data owner
bit.ly/regionh-english
Data administrator
The Danish Clinical Registries (RKKP)
Contact data administrator
Annette Odby
T: 21 68 75 70
E: ANNODB@rkkp.dk
Website - data administrator
bit.ly/rkkr-cpop