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DATA PRESENTATION

Danish Sarcoma Database

DATABASE

Primary variables


Age

Cause of death

Charlson comorbidity index

Chemotherapy

Comorbidity

Complications

Date of death

Functional level

Gender

ICD10 diagnosis code

Malignity level

Metastases

Morphology

Musculoskeletal Tumour Society Scoring System (MSTS) score

Operation - data

Postoperative data

Radiation treatment

Radiological examination

Radiological examination

TNM classification

Tumour data

Tumour localisation

Tumour size

Introduction

The Danish Sarcoma Database (DSD) is a national clinical quality database that contains data on malignant connective tissue tumours and benign tumours, aggressive fibromatosis and giant cell bone tumours that are in an aggressive stage and which are extensively treated as low-malignancy sarcomas. In addition to demographic data, the database includes details of the spread of tumours, their size and degree of malignancy, the incidence of recidivism and metastasis, operations, radiation/chemotherapy, comorbidity, etc.

DSD is aimed at improving the quality of treatment and prognosis for sarcoma patients in Denmark. The database is also intended to contribute to quality assurance for the specification of requirements set out for the treatment package for sarcoma patients.

DSD is anchored in the Danish Sarcoma Group. Data is based on online entry of data on the Clarion IT system from the Institute for Experimental Clinical Oncology for Research, from the Department of Experimental Clinical Oncological Research, Aarhus University Hospital. Data to DSD also comes from the National Patient Register (LPR), The Central Personal Registry (CPR) and Pathology Bank.

 

More details

Abbreviation
DSD
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of all patients with a first diagnosis of sarcoma, regardless of its location
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
Central Denmark Region
Contact data owner
Regionshuset Viborg
Skottenborg 26
8800 Viborg 
Website - data owner
www.rm.dk/om-os/english
Data administrator
The Danish Clinical Registries (RKKP)
Contact data administrator
Mette Roed Eriksen
T: 29 24 68 09
E: MEEERI@rkkp.dk
Website - data administrator
dsg.ortopaedi.dk
Website - data administrator
www.rkkp.dk/om-rkkp/de-kliniske-kvalitetsdatabaser/dansk-sarkom-database