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DATA PRESENTATION

Nordic Database for Rare Diseases

DATABASE

Primary variables


Birth weight

Clinical verification

CPR No.

Fetal age

Heritability

ICD10 diagnosis code

Labour - duration

Molecular genetic verification

OMIN classification

Pathological verification

Subdiagnosis

Introduction

The Nordic Database for Rare Disease (RareDis) is a clinical quality database which contains data relating to the development of treatment over time for patients with rare diagnoses including rare hereditary dental diseases.

The purpose of RareDis is to provide the basis for improving the quality of treatment and to promote collaboration between Danish departments so as to ensure sufficient data for use in developing treatment, benchmarking, best practice and quality.

Rare diseases cover: Excess growth syndromes, chromosomal disparities with complex symptomatology, retardation syndrome with complex symptomatology, hereditary connective tissue disease, harmatomatosis, craniofacial syndromes, skeletal dysplasia, dermatological disease, neurodegenerative and muscular disease, metabolic disease.

Clinical genetics departments, including rare disease centres, have been reporting to the database since 2007.

More details

Abbreviation
RareDis
Type
Nationwide clinical quality database
Purpose
Clinic quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of patients with rare complicated disease with a prevalence of less than 500 per disease (although 1000 for NF1) in Denmark, also including rare congenital dental disorders
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

  • Application for data access is sent to the board of the database
  • After approval the application is forwarded to the contact person of the database
  • The contact person controls the application
  • If the application is complete the applicant must accept the terms of extradition of data (a written acceptance is sent via e-mail to the contact person)
  • The application is sent to data manager
  • Approval and extradition of data
  • within 30 days after data delivery the applicant must control the data extraction and afterwards it should be deleted

 

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
Rune Bjerg Hansen
T: 24 34 84 68
E: ruhans@rkkp.dk
Website - data administrator
bit.ly/nordic-database-rare-diseases
Website - data administrator
bit.ly/nordisk-database-sjældne-sygdomme