Database: German Childhood Cancer Registry (DKKR) (Germany): Difference between revisions

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<span style="display:none">forresearchers</span>
<span style="display:none">germanycountry</span>
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Go back to [[Germany]] page
'''Type of database:''' [[databaseType::registry]].


'''Primary purpose:''' Collect epidemiological cancer data for children under 18 diagnosed with cancer.
'''Primary purpose:''' Collect epidemiological cancer data for children under 18 diagnosed with cancer.
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'''Sponsor, manager or home institution:''' [[dataOwner::Institut für Medizinische Biometrie, Epidemiologie und Informatik, Universitätsmedizin Mainz]].
'''Sponsor, manager or home institution:''' [[dataOwner::Institut für Medizinische Biometrie, Epidemiologie und Informatik, Universitätsmedizin Mainz]].


'''Type of information:''' Incidence, survival and mortality of children with cancer by age, sex and cancer type.
'''Type of information:''' [[databaseStructure::longitudinal]]. [[hasVariable::cancer incidence]], [[hasVariable::cancer survival]], and [[hasVariable::number of deaths|mortality]] of children with cancer by [[hasVariable::year]], [[hasVariable::age]], [[hasVariable::sex]] and [[hasVariable::diagnosis|cancer type]]. A data dictionary was not found.
 
'''Available type of information:''' [[availableVariable::cancer incidence]], [[availableVariable::cancer survival]], and [[availableVariable::number of deaths|mortality]] of children with cancer by [[availableVariable::year]], [[availableVariable::age]], [[availableVariable::sex]] and [[availableVariable::diagnosis|cancer type]]. [https://www.kinderkrebsregister.de/typo3temp/secure_downloads/42507/0/1c5976c2ab8af5b6b388149df7182582a4cd6a39/Buch_DKKR_Jahresbericht_2019_komplett.pdf Click here to learn more].


'''Source of Information:''' Information about GPOH study patients is sent to the DKKR. [https://www.kinderkrebsregister.de/dkkr/dokumentare/faq/gpoh-studien-und-gpoh-register.html#c113131 Click here to learn more].
'''Source of Information:''' Information about GPOH study patients is sent to the DKKR. [https://www.kinderkrebsregister.de/dkkr/dokumentare/faq/gpoh-studien-und-gpoh-register.html#c113131 Click here to learn more].
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'''Cancer areas of interest:''' [[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]]. [https://www.kinderkrebsregister.de/typo3temp/secure_downloads/42507/0/1c5976c2ab8af5b6b388149df7182582a4cd6a39/Buch_DKKR_Jahresbericht_2019_komplett.pdf Click here to learn more].
'''Cancer areas of interest:''' [[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]]. [https://www.kinderkrebsregister.de/typo3temp/secure_downloads/42507/0/1c5976c2ab8af5b6b388149df7182582a4cd6a39/Buch_DKKR_Jahresbericht_2019_komplett.pdf Click here to learn more].


'''Data access:''' [[dataAvailability::partially publicly available]]. [https://www.kinderkrebsregister.de/dkkr/ergebnisse/jahresberichte.html Click here to access]. Instructions to request data for restricted content [[hasDataAccessInstructions::[https://wims.imbei.uni-mainz.de/kontakt.jsf click here to access]]].
'''Data access:''' [[dataAvailability::partially publicly available]]. [https://www.kinderkrebsregister.de/dkkr/ergebnisse/jahresberichte.html Click here to access]. [https://www.kinderkrebsregister.de/dkkr/dokumentare/faq/arbeitsweise-des-dkkr.html Click here to learn more about the restricted data access]. Data can be downloaded in the [[hasDownloadableData::PDF]] format. [[hasGrantRequirement::Data requires a grant proposal to be accessed]]. Instructions to request data for restricted content [[hasDataAccessInstructions::[https://wims.imbei.uni-mainz.de/kontakt.jsf click here to access]]].
 
'''Contact information:''' [https://wims.imbei.uni-mainz.de/kontakt.jsf Click here to access].


'''Contact information:''' [https://www.kinderkrebsregister.de/dkkr/ueber-uns/personal.html Click here to access].
<span style="display:none">Esophagus</span>
<span style="display:none">Stomach</span>
<span style="display:none">Small intestine</span>
<span style="display:none">Large intestine</span>
<span style="display:none">Rectum</span>
<span style="display:none">Anus</span>
<span style="display:none">Liver</span>
<span style="display:none">Gallbladder</span>
<span style="display:none">Bile ducts</span>
<span style="display:none">Pancreas</span>
<span style="display:none">Colon</span>
<span style="display:none">Lung</span>
<span style="display:none">Trachea</span>
<span style="display:none">Bronchi</span>
<span style="display:none">Pleura</span>
<span style="display:none">Mediastinum</span>
<span style="display:none">Muscle</span>
<span style="display:none">Fat</span>
<span style="display:none">Tendon</span>
<span style="display:none">Ligament</span>
<span style="display:none">Blood vessels</span>
<span style="display:none">Connective tissue</span>
<span style="display:none">Sarcoma</span>
<span style="display:none">Angiosarcoma</span>
<span style="display:none">Liposarcoma</span>
<span style="display:none">Lobular</span>
<span style="display:none">Breast</span>
<span style="display:none">Nipple</span>
<span style="display:none">Areola</span>
<span style="display:none">Ductal</span>
<span style="display:none">Prostate</span>
<span style="display:none">Testicles</span>
<span style="display:none">Penis</span>
<span style="display:none">Eye</span>
<span style="display:none">Brain</span>
<span style="display:none">Spinal cord</span>
<span style="display:none">Blood</span>
<span style="display:none">Bone marrow</span>
<span style="display:none">Lymph nodes</span>
<span style="display:none">Spleen</span>
<span style="display:none">Leukemia</span>
<span style="display:none">databaseType::registry</span>
<span style="display:none">dataOwner::Institut für Medizinische Biometrie, Epidemiologie und Informatik, Universitätsmedizin Mainz</span>
<span style="display:none">databaseStructure::longitudinal</span>
<span style="display:none">hasVariable::cancer incidence</span>
<span style="display:none">hasVariable::cancer survival</span>
<span style="display:none">hasVariable::number of deaths|mortality</span>
<span style="display:none">hasVariable::year</span>
<span style="display:none">hasVariable::age</span>
<span style="display:none">hasVariable::sex</span>
<span style="display:none">hasVariable::diagnosis|cancer type</span>
<span style="display:none">availableVariable::cancer incidence</span>
<span style="display:none">availableVariable::cancer survival</span>
<span style="display:none">availableVariable::number of deaths|mortality</span>
<span style="display:none">availableVariable::year</span>
<span style="display:none">availableVariable::age</span>
<span style="display:none">availableVariable::sex</span>
<span style="display:none">availableVariable::diagnosis|cancer type</span>
<span style="display:none">dataLevel::national level</span>
<span style="display:none">dataStart::1980</span>
<span style="display:none">dataEnd::onwards</span>
<span style="display:none">dataAvailability::partially publicly available</span>
<span style="display:none">hasDownloadableData::PDF</span>
<span style="display:none">hasGrantRequirement::Data requires a grant proposal to be accessed</span>
<span style="display:none">hasDataAccessInstructions::[https://wims.imbei.uni-mainz.de/kontakt.jsf click here to access</span>
<span style="display:none">isDatabase</span>
<span style="display:none">hasCancerType::C15-C26: Digestive system cancers</span>
<span style="display:none">hasCancerType::C30-C39: Lung/chest cancers</span>
<span style="display:none">hasCancerType::C45-C49: Soft tissue cancer</span>
<span style="display:none">hasCancerType::C50: Breast cancer</span>
<span style="display:none">hasCancerType::C60-C63: Male genitalia cancer</span>
<span style="display:none">hasCancerType::C69-C72: Eye and brain cancer</span>
<span style="display:none">hasCancerType::C81-C96: Cancers of the blood and immune system</span>
<span style="display:none">hasCancerType::C00-D48: All neoplasms</span>
<span style="display:none">hasCancerType::C00-C97: All cancer types</span>
<span style="display:none">Esophageal</span>
<span style="display:none">Gastric</span>
<span style="display:none">Intestinal</span>
<span style="display:none">Bowel</span>
<span style="display:none">Colorectal</span>
<span style="display:none">Appendix</span>
<span style="display:none">Appendiceal</span>
<span style="display:none">Duodenum</span>
<span style="display:none">Jejunum</span>
<span style="display:none">Ileum</span>
<span style="display:none">Anal</span>
<span style="display:none">Perianal</span>
<span style="display:none">Hepatic</span>
<span style="display:none">Biliary</span>
<span style="display:none">Hepatobiliary</span>
<span style="display:none">Subcutaneous</span>
<span style="display:none">Extremity</span>
<span style="display:none">Peripheral nerve</span>
<span style="display:none">Axilla</span>
<span style="display:none">Axillary</span>
<span style="display:none">Mammary</span>
<span style="display:none">Prostatic</span>
<span style="display:none">Testicular</span>
<span style="display:none">Penile</span>
<span style="display:none">Ocular</span>
<span style="display:none">Orbital</span>
<span style="display:none">Retinal</span>
<span style="display:none">Optic nerve</span>
<span style="display:none">Meninges</span>
<span style="display:none">Meningeal</span>
<span style="display:none">Cerebral</span>
<span style="display:none">Cerebellar</span>
<span style="display:none">Brainstem</span>
<span style="display:none">Lymphatic</span>
<span style="display:none">Lymphoid</span>
<span style="display:none">Lymphoma</span>
<span style="display:none">Hematologic</span>
<span style="display:none">Hematopoietic</span>
<span style="display:none">Myeloma</span>
<span style="display:none">Plasma cell</span>

Latest revision as of 11:57, 14 December 2025

forresearchers germanycountry Go back to Germany page

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 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::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 hasCancerType::C00-D48: All neoplasms hasCancerType::C00-C97: All cancer types Esophageal Gastric Intestinal Bowel Colorectal Appendix Appendiceal Duodenum Jejunum Ileum Anal Perianal Hepatic Biliary Hepatobiliary Subcutaneous Extremity Peripheral nerve Axilla Axillary Mammary Prostatic Testicular Penile Ocular Orbital Retinal Optic nerve Meninges Meningeal Cerebral Cerebellar Brainstem Lymphatic Lymphoid Lymphoma Hematologic Hematopoietic Myeloma Plasma cell