The Netherlands
Cancer Centers
Healthcare System
Administrative or Claims Data
Database: National Basic Register of Hospital Care (LBZ)
Primary purpose:
Sponsor, manager or home institution: Dutch Hospital Data Foundation (DHD).
Type of information:
Source of information: Hospital's reports.
Data level: Patient-level.
Number of Records: Unknown.
Date range: Data referring from 1991 to 2013 are from the Dutch Medical Registration (LMR) and are also available in the registry. The National Basic Register of Hospital Care (LBZ) replaced this entity and offers standardized data from 2014 on.
Cancer Areas of Interest:
Data access: here
Information/contact for data request: [ Contact information].
Registries
Database: Netherlands Cancer Registry (NKR)
Primary purpose: Registry and monitor cancer statistics around Netherlands.
Sponsor, manager or home institution: Comprehensive Cancer Center of the Netherlands (IKNL).
Available type of information:
- Incidence: Count, crude rate per 100,000 persons per year, European Standardized Rate (ESR) per 100,000 persons per year, World Standardized Rate (WSR), Revised European Standardized Rate (RESR) by type of cancer, gender, age, region, and year.
- Prevalence: 5 year, 10 year, and 20 year prevalence by type of cancer, gender, age, region, and year.
- Mortality: Count, crude rate per 100,000 persons per year, European Standardized Rate (ESR) per 100,000 persons per year, World Standardized Rate (WSR), Revised European Standardized Rate (RESR) by type of cancer, gender, age, and year.
- Survival: relative survival by type of cancer, Period from diagnosis (1 year and 10 years), age at time of diagnosis, stage at time of diagnosis (TNM), and gender.
Also, there is a cancer atlas that informs of the incidence of cancer in each region of the Netherlands in the period of 2011–2020 and compares it to the Dutch average. This information can be selected by type of cancer, region, and gender.
Type of information: The type of information available to each type of cancer at patient level can be seen in this website.
Source of information: Hospitals' reports.
Data level: Regional level (open access) and Patient level (restricted access).
Number of Records: Contains information about all new cases of malignant neoplasms and some benign neoplasms (tumors of the central nervous system, borderline tumors of the ovary, and AL amyloidosis) in Netherlands.
Date range: Varies according to the diagnosis and the type of information. It can be checked in this website.
Cancer Areas of Interest: Regional data includes all invasive cancers except basal cell carcinoma of the skin.
Data access: Regional level data is available here. Access to patient level data can be requested by following the steps described here. The cancer atlas can be accessed here.
Information/contact for data request: Contact information.
Database: Mortality by Cause of Death
Primary purpose: Publish data concerning the number of deaths in the territory.
Sponsor, manager or home institution: Centraal Bureau voor de Statistiek.
Available type of information: Number of deaths in the population of the Netherlands by main underlying cause of death (extensive list of 'three digit codes'), by age, gender, and year.
Deceased; leading causes of death (short list) by region, age, gender, and year.
Source of information: Declaration of the cause of death and Basic personal registration (BRP) are sent from regional hospitals to the statistical organization.
Data level: National level, Regional level (open access) and Patient level (restricted access).
Number of Records: Unknown.
Date range: 1996 onwards (national and regional level) and 1995 onwards (patient level).
Cancer Areas of Interest: Total neoplasms (C00-D48); Total malignant neoplasms (C00-C97); Malignant neoplasms of lip, oral cavity and pharynx (C00-C14); Malignant neoplasms of oesophagus (C15); Malignant neoplasms of stomach (C16); Malignant neoplasms of colon (C18); Malignant neoplasms of rectum, rectosigmoid and anus (C19-C21); Malignants neoplasms of liver and intrahepatic bile ducts (C22.0 - C22.8); Malignant neoplasms of galbladder and bile ducts (C23-C24); Malignant neoplasms of pancreas (C25); Malignant neoplasms of larynx (C32); Malignant neoplasms of trachea, bronchus and lung, Trachea (windpipe) including branchings (C33-C34); Melanoma skin (C43); Malignant neoplasms of breast (C50); Malignant neoplasms of cervix uteri (C53); Malignant neoplasms of corpus uteri and uterus unspecified (C54-C55); Malignant neoplasms of ovary (C56); Malignant neoplasms of prostate (C61); Malignant neoplasms of kidney, except renal pelvis (C64); Malignant neoplasms of bladder (C67); Malignant neoplasms of lymphoid, heamatopoietic and related tissue (C81-C96); Other malignant neoplasms (C17, C22.9, C26-C31, C35-C41, C44-C49, C51-C52, C57-C60, C62-C63, C65-C66, C68-C80, C97); Other neoplasms (D00-D48). [6]
Data access: National level data can be accessed here. Regional level information can be accessed here. The required proccess to access patient level data can be checked here.
Information/contact for data request: Contact information.
Database: Registry of histo and cytopathology
Primary purpose: Provides organized pathology data to enhance the quality of diagnosis, treatment, and patient safety. Also facilitates scientific study.
Sponsor, manager or home institution: the Pathological Anatomical National Automated Archive (PALGA).
Available type of information: Number of diagnostics by type of disease (includes neoplasms), gender, year, age, and type of examination (cytology or histology).
To facilitate the search process for cancer terms, the main thesaurus codes used are listed in this document.
Type of information: Report identification (laboratory number, year, type of study, pa number, and date of receipt of study material at the laboratory);
Patient data (pseudonymized patient identification, gender, and age);
Conclusion (conclusion in pathology report: free text or automatically generated from protocolized reporting module); diagnosis lines (one or more lines, consisting of diagnostic terms from thethesaurus, prepared according to fixed structure);
Additional report data [kopacb code (diagnosis coding in cervical cytology), fields from standardized reporting module (e.G. Number of lymph nodes for colon carcinoma, grading in mammary carcinoma, etc.), clinical data, microscopy, macroscopy and epicrise].
It is possible to integrate data from the Netherlands Cancer Registry (NKR) and this pathology registry. This adjustment makes the investigation much richer in information since it permits the researcher to have more information on each case. It is useful to obtain pathology history, information about sections or tissues, follow-up, and additional information about tumors from the NKR. This type of linkage is explained better here.
Source of information: Daily or weekly pathology reports from laboratories all around the Netherlands.
Data level: National-level (open access) and patient-level (restricted access).
Number of Records: Since 2017, when there were more than 72 million pathology results stored, the number of registries increases by approximately 2 million each year.
Date range: 1971 onwards. The registry has had nationwide information since 1991.
Cancer Areas of Interest: All types of cancer. [8]
Data access: National-level data is available here and there is some information and instructions about the use of this database here. Access to patient-level information can be requested following the instructions presented here.
Information/contact for data request: Contact information.
