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International Neuroblastoma Risk Group (INRG)
PCDC
Data Resource:  PCDC
Point of Contact:  
Suzi Birz,  
Program

About This Dataset
The INRG task force has established a database containing information on over 22,000 children with neuroblastoma from around the world. These data are available to investigators from around the world for data mining studies, and significant discoveries have already been made using this unique resource. The patient data included in this database comes from cooperative groups: Children's Oncology Group (COG), Gesellschaft fur Padiatrische Onkologie und Hamatologie (GPOH), Neuroblastoma Committee of Japan Children's Cancer Group (JCCG), Japanese Infantile Neuroblastoma Co-operative Study Group (JINCS), and Society of Paediatric Oncology Europe Neuroblastoma Group (SIOPEN). The amount of data continues to expand, as the cooperative groups have agreed to update existing patient data and add new patient data once clinical trials are completed and the objectives of the trial are published.
Core Data Elements
Number of Cases
25,404
Case Sex
Female (10,171); Male (11,915); Unknown (3,318)
Case Age At Diagnosis
0 to 4 years (7,930); 5 to 9 years (7,877); 10 to 14 years (5,130); 15 to 19 years (1,989); 20 to 24 years (505); 25 to 29 years (121); 30 to 34 years (43); 30 to 39 years (6); Pediatric and Young Adult (<40 years) (1,803)
Case Race
American Indian or Alaska Native (81); Asian (879); Black or African American (1,763); More Than One Race (57); Native Hawaiian or Other Pacific Islander (46); White (12,186); Not Reported (5,935); Unknown (4,457)
Case Ethnicity
Hispanic or Latino (1,776); Not Hispanic or Latino (15,352); Unknown (8,276)
Case Disease Diagnosis
Ganglioneuroblastoma, Intermixed (Schwannian Stroma-Rich) (1,105); Ganglioneuroblastoma, Nodular (Composite) (1,090); Ganglioneuroma (Schwannian Stroma-Dominant), Maturing Subtype (295); Neuroblastoma (Schwannian Stroma-Poor) (15,784); Unknown (6,954)
Case Tumor Site
Abdomen (5,372); Adrenal Gland (5,573); Bone (1,789); Bone Marrow (1,867); Central Nervous System (54); Liver (560); Lung (137); Lymph Nodes (522); Neck (572); Other (1,398); Pelvis (447); Skin (69); Thorax (2,609); Unknown (172)
Additional Data Elements
DATA REPOSITORY
Grant Information
U10CA180886
COG NCTN Network Group Operations Center
U10CA180899
Children's Oncology Group Statistics and Data Center
PROGRAM ID
PA-18-590
RFA-CA-17-057
Published In
https://commons.cri.uchicago.edu/publications/#1616189689942-1bbf5e4b-848e
Charts
Male (11,915); Female (10,171); Unknown (3,318)
11,915Male