Germany
Cancer Centers
Healthcare System
Germany operates a multi-payer healthcare system, blending both public and private health insurance. All residents are mandated to have health insurance, either through the Statutory Health Insurance (SHI), comprising of 110 sickness funds covering 88% of the population, or through Private Health Insurance (PHI) provided by 41 companies, covering 10% of the population. The remainder, including military personnel, are covered under special schemes.
The Federal Ministry of Health is the primary governmental body overseeing the health system. The delivery of services is managed at the regional level by regional associations of SHI physicians and the regional branches of the Federal Association of Statutory Health Insurance Funds.
Universal healthcare benefits include preventive services, inpatient and outpatient care, prescription drugs (except those explicitly excluded by law or following a benefits assessment), mental health care, dental care, optometric services, rehabilitation, and home care covered by long-term care insurance.
Those earning below a certain threshold are automatically enrolled in the SHI, while those above can choose between SHI or PHI. The healthcare system suffers some fragmentation between inpatient and ambulatory care. Ambulatory care, provided by around 160,000 GPs and specialists, is mostly reimbursed through fee-for-service payments. More than 1900 hospitals provide inpatient care, paid through a Diagnosis-Related Group (DRG) system.
Germany has been advancing digital health records, with the electronic health card as the centerpiece. Claims data is processed by the respective health insurance funds, and disease registries are maintained at both regional and national levels. A Telematics Infrastructure connects healthcare providers, pharmacies, hospitals, and health insurers securely, enhancing data exchange and coordination of care.
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. More information about the contents of the survey database [1].
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: Neoplasms (C00 – D48).
Open data access: Partially publicly available [2]. More information about the database [3]. Instructions to request data for restricted content [4], [5].
Information/Contact for data request: Contact information [6].
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 [7].
Available type of information: Incidence, prevalence, mortality and survivorship of cancer, case numbers, crude rate, 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 [8].
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: Partially publicly available [9]. Instructions to request data for restricted content [10].
Information/Contact for data request: Contact information [11].
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. More information about the contents of the survey database [12].
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: Neoplasms (C00 – D48).
Open data access: Partially publicly available [13]. Instructions to request data for restricted content [14], [15].
Information/Contact for data request: Contact information [16].
Database: German Childhood Cancer Registry (DKKR)
Sponsor, manager or home institution: Institut für Medizinische Biometrie, Epidemiologie und Informatik, Universitätsmedizin Mainz.
Primary purpose: Collect epidemiological cancer data for children under 18 diagnosed with cancer.
Type of information: Incidence of children with cancer by age and cancer type.
Source of Information: Information about GPOH study patients is sent to the DKKR [17].
Data level: National level.
Number of Records: Covers more than 95% of the population.
Date Range: 1980 onwards.
Cancer Areas of Interest: Leukemias (lymphocytic and acute myeloid leukemias); Lymphomas (Hodgkin's and Non-Hodgkin's lymphomas); Brain (ependymomas, astrocytomas, intracranial and intraspinal embryonic); Peripheral nerve cell (neuroblastoma and ganglioneuroblastoma); Kidney (nephroblastoma); Retinoblastoma; Bone (osteosarcoma, Ewing's sarcoma); Soft tissue sarcomas (rhabdomyosarcoma); Liver; Germ cell tumors.
Open data access: Partially publicly available [18], [19]. Instructions to request data for restricted content [20].
Information/Contact for data request: Contact information [21].
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: Data dictionary containing all variables [22], 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) [23].
Date Range: 2008.
Cancer Areas of Interest: Unknown.
Open data access: Partially publicly available [24]. Instructions to request data for restricted content [25].
Information/Contact for data request: Contact information [26].
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: Access information [27].
Compilation: Leitlinienprogramm Onkologie Treatment Guidelines
Sponsor, manager or home institution: Leitlinienprogramm Onkologie.
Primary purpose:' Offer medical treatment guidelines based on the best available medical knowledge.
Type of information: Information about early detection, diagnosis, treatment, and aftercare. Treatment guidelines for a variety of cancer types, as well as other guidelines such as for psycho-oncological diagnostics.
Access to information: Access information [28].
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: Access information [29].
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 in "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: Access information [30].
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: Access information [31].
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.
Available guides: Cancer Therapy During the COVID-19 Pandemic; Immunotherapy related side effects and their management; Survivorship; Cancer pain; Multiple Myelom.
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: Patient Guidelines [2].
