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DATA PRESENTATION

Danish Testicular Cancer Database

DATABASE

Primary variables


AFP count

Biopsy

Carcinoma in situ

CNS metastases

CPR No.

Date of birth

HCG count

LDH count

Metastases

Operation - data

Pineal gland

Radiation dose

Treatment

Vital status

Introduction

The Danish Testicular Cancer database (DaTeCa) is a nationwide clinical quality database that contains detailed information on more than 300 variables relating to histology, stage, treatment, recurrence, pathology, tumour markers, kidney and lung function, etc.
The main aim of DaTeCa is to improve the quality of diagnosing and treating patients with testicular cancer.

The patient population in DaTeCa covers all males aged ≥15 presenting with an initial diagnosis of testicular cancer according to the National Patient Register (LPR) and/or the Pathology Register (LRP). It includes patients with primary testicular tumour and patients with extra gonadal germ cell tumours. It has however been decided that patients with replacement CPR numbers should be excluded. All departments in Denmark undertaking treatment and care of patients with testicular cancer notify data to DaTeCa.

More details

Abbreviation
DaTeCa
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The patient population covers all males aged ≥15 presenting with an initial diagnosis of testicular cancer according to the National Patient Register (LPR) and/or the Pathology Register (LRP). It includes patients with primary testicular tumour and patients with extragonadal germ cell tumours. Patients with replacement CPR numbers are not included in the database
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
Lene Sveistrup Bengtsson
T: 24 66 47 25
E: LEBENG@rkkp.dk
Website - data administrator
ducg.dk
Website - data administrator
www.rkkp.dk/om-rkkp/de-kliniske-kvalitetsdatabaser/testis-cancer