Database: Nationwide Registry of Childhood Hematological Malignancies and Solid Tumours (NARECHEM-ST) (Greece): Difference between revisions

From Beacon
No edit summary
m (Update categories.)
 
(28 intermediate revisions by 5 users not shown)
Line 1: Line 1:
{{forresearchers}}
<span style="display:none">forresearchers</span>
<span style="display:none">greececountry</span>
Go back to [[Greece]] page
Go back to [[Greece]] page


'''Sponsor, manager or home institution:''' NARECHEM-ST.
'''Type of database:''' [[databaseType::registry]], [[databaseType::biobank]].


'''Primary purpose:''' Provide information about cancer incidence in children (0-14 years old) across Greece.
'''Primary purpose:''' Provide information about cancer incidence in children (0-14 years old) across Greece.


'''Type of information:''' Demographic data, personal and family history of the primary child, and comprehensive details concerning the disease, such as confirmed diagnosis coded under ICD-O-3 since 2007, tumor morphology and localization, stage, metastases, and survival. Moreover, biological samples are accessible for the majority of cases and controls. The analytical list of other variables that are obtainable through interviews for cases and controls or furnished by treating physicians is electronically preserved. If applicable, bone marrow aspiration slides and biopsy reports are provided, while biopsy specimens are stored in their respective Pathology Departments. There is also follow-up data on all patients as well as biological materials collected and stored.
'''Sponsor, manager or home institution:''' [[dataOwner::NARECHEM-ST]].


'''Available type of information''': Annual Crude and Age-Standardized Incidence Rates per 1,000,000; Annual Age-Standardized Incidence Rates (AIR) per 1,000,000 by histological subtype; Age-Standardized Incidence Rates (AIR) per 1,000,000 by histological subtype and gender; Incidence Rates per 1,000,000 by age group and gender; Incidence Rates per 1,000,000 by age group and histological subtype; Number of cases by behavior
'''Type of information:''' [[databaseStructure::longitudinal]]. Data dictionary has not been found. It includes demographic data, personal and family history of the primary child, [[hasVariable::sex]], [[hasVariable::age]], [[hasVariable::year]]; confirmed [[hasVariable::diagnosis]], tumour morphology and [[hasVariable::tumour histology|localization]], [[hasVariable::tumour staging|stage]], metastases, and [[hasVariable::cancer survival]]. Moreover, biological samples are accessible for the majority of cases and controls. If applicable, bone marrow aspiration slides and biopsy reports are provided, while biopsy specimens are stored in their respective Pathology Departments. There is also follow-up data on all patients as well as biological materials collected and stored.  
Age-standardized Incidence Rates (AIR) per 1,000,000 by behavior and gender; Annual Age-Standardized Incidence Rates (AIR) per 1,000,000 by behavior; Number of cases by ICCC-3 group III histological subtype; Number of cases by histological subtype; Age-Standardized Incidence Rates (AIR) per 1,000,000 by gender and ICCC-3 group III histological subtype; Percentage of cases by stage of INRG; Percentage of cases by anatomical stage.


'''Source of Information:''' Reports mainly from seven pediatric hematology-oncology departments across Greece, and personal interviews with children or their guardians.
'''Available type of information''': [[availableVariable::age]]; [[availableVariable::sex]]; [[availableVariable::diagnosis]]; [[availableVariable::tumour histology]]; [[availableVariable::tumour staging]]; [[availableVariable::cancer incidence]]; [[availableVariable::year]].  


'''Data level:''' Patient level.
[[hasAvailableDataDictionary::Data Dictionary: Nationwide Registry of Childhood Hematological Malignancies and Solid Tumours (NARECHEM-ST)]].


'''Available data level:''' National level.
'''Source of Information:''' Reports mainly from seven pediatric hematology-oncology departments across Greece, and personal interviews with children or their guardians. [http://narechem.makis.us/node/7 Click here to learn more.]


'''Number of Records:''' About 4000 patients.
'''Data level:''' [[dataLevel::patient level]].


'''Date Range:''' 1996 to 2019.
'''Available data level:''' [[availableDataLevel::national level]].


'''Cancer Areas of Interest:''' Leukemias, lymphomas, CNS tumors, liver tumors, neuroblastomas, and nephroblastomas (Wilm’s tumors)
'''Number of records:''' About 4000 patients.


'''Data access:''' Partially publicly available [http://www.narechem.gr/node/9]. Instructions to request data for restricted content [http://www.narechem.gr/node/13].
'''Date range:''' [[dataStart::1996]] to [[dataEnd::2019]].


'''Contact information:''' Information [http://www.narechem.gr/node/11].
'''Cancer areas of interest:''' [[hasCancerType::C15-C26: Digestive system cancers]]; [[hasCancerType::C64-C68: Urinary system cancers]]; [[hasCancerType::C69-C72: Eye and brain cancer]]; [[hasCancerType::C73-C75: Thyroid and other gland cancers]]; [[hasCancerType::C81-C96: Cancers of the blood and immune system]]. See the full list of cancer types:
 
[[Cancer Areas of Interest: Nationwide Registry of Childhood Hematological Malignancies and Solid Tumours (NARECHEM-ST)|Nationwide Registry of Childhood Hematological Malignancies and Solid Tumours (NARECHEM-ST)]].
 
'''Data access:''' [[dataAvailability::partially publicly available]]. Data can be downloaded in the [[hasDownloadableData::JPG]] format. [[hasGrantRequirement::Data requires a grant proposal to be accessed]]. Instructions to request data for restricted content [[hasDataAccessInstructions::[http://narechem.makis.us/node/13 click here to access]]].
 
'''Contact information:''' [http://narechem.makis.us/node/11 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">Kidney</span>
<span style="display:none">Ureter</span>
<span style="display:none">Bladder</span>
<span style="display:none">Urethra</span>
<span style="display:none">Eye</span>
<span style="display:none">Brain</span>
<span style="display:none">Spinal cord</span>
<span style="display:none">Thyroid gland</span>
<span style="display:none">Parathyroid</span>
<span style="display:none">Adrenal glands</span>
<span style="display:none">Pituitary gland</span>
<span style="display:none">Pancreas</span>
<span style="display:none">Thymus gland</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">databaseType::biobank</span>
<span style="display:none">dataOwner::NARECHEM-ST</span>
<span style="display:none">databaseStructure::longitudinal</span>
<span style="display:none">hasVariable::sex</span>
<span style="display:none">hasVariable::age</span>
<span style="display:none">hasVariable::year</span>
<span style="display:none">hasVariable::diagnosis</span>
<span style="display:none">hasVariable::tumour histology|localization</span>
<span style="display:none">hasVariable::tumour staging|stage</span>
<span style="display:none">hasVariable::cancer survival</span>
<span style="display:none">availableVariable::age</span>
<span style="display:none">availableVariable::sex</span>
<span style="display:none">availableVariable::diagnosis</span>
<span style="display:none">availableVariable::tumour histology</span>
<span style="display:none">availableVariable::tumour staging</span>
<span style="display:none">availableVariable::cancer incidence</span>
<span style="display:none">availableVariable::year</span>
<span style="display:none">hasAvailableDataDictionary::Data Dictionary: Nationwide Registry of Childhood Hematological Malignancies and Solid Tumours (NARECHEM-ST)</span>
<span style="display:none">dataLevel::patient level</span>
<span style="display:none">availableDataLevel::national level</span>
<span style="display:none">dataStart::1996</span>
<span style="display:none">dataEnd::2019</span>
<span style="display:none">dataAvailability::partially publicly available</span>
<span style="display:none">hasDownloadableData::JPG</span>
<span style="display:none">hasGrantRequirement::Data requires a grant proposal to be accessed</span>
<span style="display:none">hasDataAccessInstructions::[http://www.narechem.gr/node/13 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::C64-C68: Urinary system cancers</span>
<span style="display:none">hasCancerType::C69-C72: Eye and brain cancer</span>
<span style="display:none">hasCancerType::C73-C75: Thyroid and other gland cancers</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">hasDataAccessInstructions::[http://narechem.makis.us/node/13 click here to access</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">Renal</span>
<span style="display:none">Urothelial</span>
<span style="display:none">Ureteral</span>
<span style="display:none">Urethral</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>
<span style="display:none">Endocrine</span>

Latest revision as of 11:58, 14 December 2025

forresearchers greececountry Go back to Greece page

Type of database: registry, biobank.

Primary purpose: Provide information about cancer incidence in children (0-14 years old) across Greece.

Sponsor, manager or home institution: NARECHEM-ST.

Type of information: longitudinal. Data dictionary has not been found. It includes demographic data, personal and family history of the primary child, sex, age, year; confirmed diagnosis, tumour morphology and localization, stage, metastases, and cancer survival. Moreover, biological samples are accessible for the majority of cases and controls. If applicable, bone marrow aspiration slides and biopsy reports are provided, while biopsy specimens are stored in their respective Pathology Departments. There is also follow-up data on all patients as well as biological materials collected and stored.

Available type of information: age; sex; diagnosis; tumour histology; tumour staging; cancer incidence; year.

Data Dictionary: Nationwide Registry of Childhood Hematological Malignancies and Solid Tumours (NARECHEM-ST).

Source of Information: Reports mainly from seven pediatric hematology-oncology departments across Greece, and personal interviews with children or their guardians. Click here to learn more.

Data level: patient level.

Available data level: national level.

Number of records: About 4000 patients.

Date range: 1996 to 2019.

Cancer areas of interest: C15-C26: Digestive system cancers; C64-C68: Urinary system cancers; C69-C72: Eye and brain cancer; C73-C75: Thyroid and other gland cancers; C81-C96: Cancers of the blood and immune system. See the full list of cancer types:

Nationwide Registry of Childhood Hematological Malignancies and Solid Tumours (NARECHEM-ST).

Data access: partially publicly available. Data can be downloaded in the JPG 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 Kidney Ureter Bladder Urethra Eye Brain Spinal cord Thyroid gland Parathyroid Adrenal glands Pituitary gland Pancreas Thymus gland Blood Bone marrow Lymph nodes Spleen Leukemia databaseType::registry databaseType::biobank dataOwner::NARECHEM-ST databaseStructure::longitudinal hasVariable::sex hasVariable::age hasVariable::year hasVariable::diagnosis hasVariable::tumour histology|localization hasVariable::tumour staging|stage hasVariable::cancer survival availableVariable::age availableVariable::sex availableVariable::diagnosis availableVariable::tumour histology availableVariable::tumour staging availableVariable::cancer incidence availableVariable::year hasAvailableDataDictionary::Data Dictionary: Nationwide Registry of Childhood Hematological Malignancies and Solid Tumours (NARECHEM-ST) dataLevel::patient level availableDataLevel::national level dataStart::1996 dataEnd::2019 dataAvailability::partially publicly available hasDownloadableData::JPG hasGrantRequirement::Data requires a grant proposal to be accessed hasDataAccessInstructions::[http://www.narechem.gr/node/13 click here to access isDatabase hasCancerType::C15-C26: Digestive system cancers hasCancerType::C64-C68: Urinary system cancers hasCancerType::C69-C72: Eye and brain cancer hasCancerType::C73-C75: Thyroid and other gland cancers hasCancerType::C81-C96: Cancers of the blood and immune system hasCancerType::C00-D48: All neoplasms hasCancerType::C00-C97: All cancer types hasDataAccessInstructions::[http://narechem.makis.us/node/13 click here to access Esophageal Gastric Intestinal Bowel Colorectal Appendix Appendiceal Duodenum Jejunum Ileum Anal Perianal Hepatic Biliary Hepatobiliary Renal Urothelial Ureteral Urethral Ocular Orbital Retinal Optic nerve Meninges Meningeal Cerebral Cerebellar Brainstem Lymphatic Lymphoid Lymphoma Hematologic Hematopoietic Myeloma Plasma cell Endocrine