Database: German Childhood Cancer Registry (DKKR) (Germany)

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Type of database: registry.

Primary purpose: Collect epidemiological cancer data for children under 18 diagnosed with cancer.

Sponsor, manager or home institution: Institut für Medizinische Biometrie, Epidemiologie und Informatik, Universitätsmedizin Mainz.

Type of information: longitudinal. cancer incidence, cancer survival, and mortality of children with cancer by year, age, sex and cancer type. A data dictionary was not found.

Available type of information: cancer incidence, cancer survival, and mortality of children with cancer by year, age, sex and cancer type. Click here to learn more.

Source of Information: Information about GPOH study patients is sent to the DKKR. Click here to learn more.

Data level: national level.

Number of records: Covers more than 95% of the population.

Date range: 1980 onwards.

Cancer areas of interest: C15-C26: Digestive system cancers; C30-C39: Lung/chest cancers; C45-C49: Soft tissue cancer; C50: Breast cancer; C60-C63: Male genitalia cancer; C69-C72: Eye and brain cancer C81-C96: Cancers of the blood and immune system. Click here to learn more.

Data access: partially publicly available. Click here to access. Click here to learn more about the restricted data access. Data can be downloaded in the PDF format. Data requires a grant proposal to be accessed. Instructions to request data for restricted content click here to access.

Contact information: Click here to access.

Esophagus Stomach Small intestine Large intestine Rectum Anus Liver Gallbladder Bile ducts Pancreas Colon Lung Trachea Bronchi Pleura Mediastinum Muscle Fat Tendon Ligament Blood vessels Connective tissue Sarcoma Angiosarcoma Liposarcoma Lobular Breast Nipple Areola Ductal Prostate Testicles Penis Eye Brain Spinal cord Blood Bone marrow Lymph nodes Spleen Leukemia databaseType::registry dataOwner::Institut für Medizinische Biometrie, Epidemiologie und Informatik, Universitätsmedizin Mainz databaseStructure::longitudinal hasVariable::cancer incidence hasVariable::cancer survival hasVariable::number of deaths|mortality hasVariable::year hasVariable::age hasVariable::sex hasVariable::diagnosis|cancer type availableVariable::cancer incidence availableVariable::cancer survival availableVariable::number of deaths|mortality availableVariable::year availableVariable::age availableVariable::sex availableVariable::diagnosis|cancer type dataLevel::national level dataStart::1980 dataEnd::onwards hasCancerType::C15-C26: Digestive system cancers hasCancerType::C30-C39: Lung/chest cancers hasCancerType::C45-C49: Soft tissue cancer hasCancerType::C50: Breast cancer hasCancerType::C60-C63: Male genitalia cancer hasCancerType::C69-C72: Eye and brain cancer hasCancerType::C81-C96: Cancers of the blood and immune system dataAvailability::partially publicly available hasDownloadableData::PDF hasGrantRequirement::Data requires a grant proposal to be accessed hasDataAccessInstructions::[https://wims.imbei.uni-mainz.de/kontakt.jsf click here to access isDatabase hasCancerType::C00-D48: All neoplasms hasCancerType::C00-C97: All cancer types hasCancerType::C00-C14: Mouth/throat cancers hasCancerType::C40-C41: Bone cancers hasCancerType::C43-C44: Skin cancers/melanoma hasCancerType::C51-C58: Female genitalia cancers hasCancerType::C64-C68: Urinary system cancers hasCancerType::C73-C75: Thyroid and other gland cancers hasCancerType::C76-C80: Cancers of unknown or unspecified areas hasCancerType::C97-C97: Cancers in multiple locations from the start hasCancerType::D00-D09: Early-stage cancers not yet spread hasCancerType::D10-D36: Benign tumour hasCancerType::D37-D48: Growths of uncertain nature hasCancerType::unknown