Germany

Healthcare System

The Statutory Health Insurance (SHI) is a compulsory health insurance system that covers 90% of the population, consisting of 110 privately-run and not-for-profit sickness funds that act as third-party payers. The services provided by these sickness funds are decided by the Federal Joint Committee, which in turn is supervised by the Ministry of Health, and all sickness funds are represented by the National Association of Statutory Health Insurance Funds. Payment for the insurance is either discounted from the salary, or from the governmental benefits or allowances a person may receive. Their children and non-working spouses are also covered at no additional cost. You can opt for a Private Health Insurance (PHI) instead if your income is superior to 66,600 Euros (as of 2023), you’re self-employed or a civil servant. That does not include supplementary PHIs.

The main body responsible for health monitoring in Germany is the Robert Koch Institute (RKI), whereas the Federal Statistics Office (Destatis) is the data holder for many health-related statistics, including hospital statistics and cause of death statistics.

Administrative or Claims Data

Database: Diagnosis Related Groups (DRG) Survey

Sponsor, manager or home institution: Forschungsdatenzentren der Statistischen Ämter des Bundes und der Länder (FDZ); Robert Koch Institute (RKI)

Primary purpose: The Diagnosis Related Groups (DRG) statistic is a full annual census of all inpatient hospital cases within Germany that are billed according to case flat rates.

Type of information: Patient information including hospital of stay, cause of admission, diagnosis, operating procedures, as well as other information. Data dictionary, methodology, and other information about the contents of the survey database can be found here.

Available type of information: Number of secondary diagnoses and operations of inpatients.

Source of Information: Hospitals send information to the Hospital Remuneration System (InEK) which is then sent to the FDZ.

Data level: Patient level.

Number of Records: 16.359.312 patients, of which 1.775.648 (10,85%)

Date Range: 2005 to 2020.

Cancer Areas of Interest: Neologisms (C00 – D48)

Open data access: Data is partially openly available. Publicly available data can be found here. More information about the database can be found here. Information on how to access the data can be found here and here.

Information/Contact for data request: Contact information can be found in the bottom of the page or here.

Registries

Database: ZfKD Cancer Registry

Sponsor, manager or home institution: Zentrum für Krebsregisterdaten; Robert Koch Institute (RKI)

Primary purpose: Collect and compile epidemiological cancer data from state cancer registries at the federal level.

Type of information: Patient location, cancer type, cancer location, primary therapies used, cause of death information (in cases of death), among other information. Data dictionary including all the variables can be found here.

Available type of information: Incidence, prevalence, mortality and survivorship of cancer, case numbers, crude rade and age-standardized rate, filtered by cancer type, age, gender and year.

Source of Information: Information is gathered from multiple state cancer registries in Germany. Information about individual state cancer registries can be found here.

Data level: Patient Level.

Available data level: National level.

Number of Records: Unknown.

Date Range: 1999 onwards.

Cancer Areas of Interest: Cancer total (C00-C97 without C44); oral cavity and pharynx (C00-C14); lip (C00); base of tongue (C01); otherwise/unspec. parts d. tongue (C02); gums (C03); floor of mouth (C04); Palate (C05); otherwise/unspec. parts d. mouth (C06); Parotid (C07); otherwise/unspec. major salivary glands (C08); tonsil (C09) Oropharynx (C10); Nasopharynx (C11); Recessus piriformis (C12); Hypopharynx (C13); otherwise/unspec. locations d. lip, d. Oral cavity and pharynx (C14); digestive organs (C15-C26); esophagus (C15); Stomach (C16); small intestine (C17); gut (C18-C20); colon (C18); Rectosigmoid (C19); rectum (C20); Anus and anal canal (C21); Liver (C22); Gallbladder and bile ducts (C23-C24); gallbladder (C23); extrahepatic bile ducts (C24); Pancreas (C25); otherwise/unspec. digestive organs (C26); respiratory and thoracic organs (C30-C39); Nasal cavity and middle ear (C30); paranasal sinus (C31); larynx (C32); lungs (C33-C34); trachea (C33); lungs and bronchi (C34); Thymus (C37); heart, mediastinum and pleura (C38); otherwise thoracic organs (C39); Bone and articular cartilage (C40-C41); bones and articular cartilage d. Extremities (C40); otherwise Bone and articular cartilage (C41); Malignant melanoma of the skin (C43); Soft and mesothelial tissues (C45-C49); Mesothelioma (C45); Kaposi's sarcoma (C46); peripheral nerves and autonomic nervous system (C47); Retroperitoneum and Peritoneum (C48); otherwise Connective tissue including soft tissue (C49); mammary gland (C50); female reproductive organs (C51-C58); Vulva (C51); Vagina (C52); cervix (C53); Body of the uterus (C54-C55); uterine body (C54); otherwise/unspec. parts d. uterus (C55); ovaries (C56); otherwise/unspec. female sex organs (C57); placenta (C58); male reproductive organs (C60-C63); Penis (C60); prostate (C61); testicles (C62); otherwise/unspec. male sex organs (C63); Urinary organs (C64-C68); kidney (C64); renal pelvis (C65); ureter (C66); urinary bladder (C67); otherwise/unspec. urinary organs (C68); Eye, Brain & Central Nervous System (C69-C72); eye (C69); Central Nervous System (C70-C72); Meninges (C70); brain (C71); Spinal cord, cranial nerves and other central nervous system (C72); Endocrine glands (C73-C75); Thyroid (C73); adrenal gland (C74); otherwise endocrine glands and related Structures (C75); other, imprecise unspecified localizations (C76-C80); otherwise and inaccurate localization (C76); Malignant neoplasm o. indication d. Localization (C80); Hodgkin's disease (C81); Non-Hodgkin lymphomas (C82-C88); Follicular non-Hodgkin lymphoma (C82); Diffuse non-Hodgkin lymphoma (C83); Peripheral and cutaneous T-cell lymphoma (C84); otherwise/unspec. types d. Non-Hodgkin lymphoma (C85); Other specified T/NK cell lymphomas (C86); Malignant immunoproliferative diseases (C88); Multiple myeloma (C90); Leukemias (C91-C95); Lymphocytic leukemia (C91); Myeloid leukemia (C92); Monocytic leukemia (C93); otherwise leukemias cell type (C94); leukemias cell type (C95); otherwise/unspec. malignant neoplasms d. lymphatic/hematopoietic tissue (C96)

Open data access: Data is partially openly available. Publicly available data can be found here. More information about the database can be found here.

Information/Contact for data request: Contact information can be found here.

Database: Cause of Death Registry

Sponsor, manager or home institution: Forschungsdatenzentren der Statistischen Ämter des Bundes und der Länder (FDZ); Robert Koch Institute (RKI)

Primary purpose: Cause of death statistics database is used to compile information about cause of death from german citizens.

Type of information: Includes cause of death, location of death, and patient information such as residence, marital status, among other information. Data dictionary, methodology, and other information about the contents of the survey database can be found here.

Source of Information: The data are based on the death certificates issued as part of the coroner's inquest.

Data level: Patient level.

Number of Records: Unknown.

Date Range: 1992 to 2020.

Cancer Areas of Interest: Neologisms (C00 – D48)

Open data access: Data is not openly available. More information about the database can be found here. Information on how to access the data can be found here and here.

Information/Contact for data request: Contact information can be found in the bottom of the page or here.

Databases for Clinical Trials, Surveys and Biobanks

Survey: German Health Interview and Examination Survey for Adults

Sponsor, manager or home institution: Robert Koch Institute (RKI)

Primary purpose: Describes the current health status of various subgroups of the general adult population of Germany aged 18-79.

Type of information: A data dictionary containing all variables can be found here, which includes self-reported cancer cases and cancer screening.

Source of Information: Personal interviews, physical examinations and analyses of blood and urine samples.

Data level: Patient level.

Number of Records: 8,151 adults (4,283 women; 3,868 men) [1]

Date Range: 2008.

Cancer Areas of Interest: Unknown.

Open data access: Data is not publicly available. Reports based on the data can be found here. Information on how to access the data can be found here.

Information/Contact for data request: Contact information can be found here.

Clinical Practices Guidelines

Compilation: DKG Guidelines

Sponsor, manager or home institution: Deutsche Krebsgesellschaft

Primary purpose:' Offer medical treatment guidelines based on the best available medical knowledge.

Type of information: Treatment guidelines for a variety of cancer types, as well as other guidelines such as for psycho-oncological diagnostics.

Access to information: Information can be found here.

Latest Policymaking Initiatives

Report: Cancer in Germany

Sponsor, manager or home institution: A collaboration between the Gesellschaft der epidemiologischen Krebsregister e.V. (GEKID) and the Zentrums für Krebsregisterdaten (ZfKD) by the Robert Koch Institute.

Primary purpose:' Provides epidemiological indicators and current trends for a total of 30 different types of cancer.

Type of information: Incidence of disease and mortality, regional and international comparisons, as well as representations of the distribution of tumor stages and the prospects of survival

'Level: National and regional level.

Access to information: Publications can be found here.

Report: National Association of Statutory Health Insurance Annual Reports

Sponsor, manager or home institution: The National Association of Statutory Health Insurance Funds

Primary purpose:' Provide an overview of plans created and actions taken during a year by the association.

Type of information: Discussions on policies, guidelines and plans relevant to the report's year. For the latest publication (2021), there are discussions on the participation of the association on the "Europe's Beating Cancer Plan", as well as an update on the results of the Cancer Registry Data Act.

'Level: National level.

Access to information: Information can be found here.

Compilation: Documents regarding Cancer Registry legislation

Sponsor, manager or home institution: The National Association of Statutory Health Insurance Funds

Primary purpose:' Offer information about Cancer Registry legislation and current status.

Type of information: Legislation, reports, expert opinions, and other documents regarding the current status of the efforts to create systematic and uniform cancer registries.

'Level: National level.

Access to information: Information can be found here.

Cancer-related Patient Associations and Resources

Compilation: Patient Guidelines

Sponsor, manager or home institution: Leitlinienprogramm Onkologie

Primary purpose:' Inform cancer patients about their condition using the results of the latest medical research.

Type of information: Information about cancer, diagnosis, treatment, supportive care, advice, and literature on the subject. There are guidelines about multiple cancer types as well as other information such as supportive care guidelines.

Access to information: Information can be found here.