Childhood Cancer Data Initiative
Point of Contact: CCDI Mailbox, NCIChildhoodCancerDataInitiative@mail.nih.gov
Program
NCI's Childhood Cancer Data Initiative (CCDI) is building a community centered around childhood cancer care and research data. Through enhanced data sharing, we can improve our understanding of cancer biology to improve preventive measures, treatment, quality of life, and survivorship, as well as ensure that researchers learn from every child with cancer. While childhood cancers represent the leading cause of death in children over the age of 1, they are collectively rare, comprising about 1%-3% of cancers diagnosed annually in the United States. Information on diagnosis, treatment, and outcomes is often stored at the hospital or institution where a child is treated, making it difficult to answer scientific questions about childhood cancer. Sharing clinical care and research data generated by children's hospitals, clinics, or networks broadly with the community can help us learn faster and on a scale much larger than any single institution caring for children can learn on its own.
Resource Description
Resource Type
Program
Specialization
Pediatric
Data Update Date
11/21/2024
Data Content Type
Clinical, Genomics/Omics
Resource Tools
Visualization Tools
Analytic Tools
Case Disease Diagnosis
CNS and Miscellaneous Intracranial and Intraspinal Neoplasms (166,868); Germ Cell Tumors, Trophoblastic Tumors and Neoplasms of Gonads (124,757); Hepatic Tumors (9,817); Leukemias, Myeloproliferative and Myelodysplastic Diseases (115,868); Lymphomas and Reticuloendothelial Neoplasms (154,311); Malignant Bone Tumors (21,112); Neuroblastoma and Other Peripheral Nervous Cell Tumors (12,078); Not Classified by SEER or In Situ (130,700); Other and Unspecified Malignant Neoplasms (14,580); Other Malignant Epithelial Neoplasms and Malignant Melanomas (689,907) ...
Number of Cases
1,433,710
Case Sex
Female (865,298); Male (568,412)
Case Age At Diagnosis
0 to 4 years (73,654); 5 to 9 years (43,116); 10 to 14 years (51,186); 15 to 19 years (85,392); 20 to 24 years (135,692); 25 to 29 years (220,987); 30 to 34 years (347,259); 35 to 39 years (531,018); Greater than 39 years (55,148)
Registry
Number of Cases
1,897,938
Case Sex
Female (1,147,338); Male (750,600)
Case Age At Diagnosis
0 to 4 years (94,533); 5 to 9 years (55,044); 10 to 14 years (65,326); 15 to 19 years (109,125); 20 to 24 years (172,633); 25 to 29 years (280,848); 30 to 34 years (442,082); 34 to 39 years (678,347)
Registry
Number of Cases
1,418,577
Case Sex
Female (859,415); Male (559,162)
Case Age At Diagnosis
0 to 4 years (71,010); 5 to 9 years (41,636); 10 to 14 years (49,771); 15 to 19 years (82,813); 20 to 24 years (131,044); 25 to 29 years (211,528); 30 to 34 years (329,035); 34 to 39 years (501,740)
Registry
Case Disease Diagnosis
Acinar cell carcinoma (1); Acute megakaryoblastic leukemia (1); Acute myeloid leukemia with myelodysplasia-related changes (1); Acute myeloid leukemia, NOS (10); Adrenal cortical carcinoma (4); Aggressive fibromatosis (2); Alveolar rhabdomyosarcoma (7); Astrocytoma, NOS (2); B lymphoblastic leukemia/lymphoma with hypodiploidy (Hypodiploid ALL) (1); B lymphoblastic leukemia/lymphoma with t(12;21)(p13;q22); TEL-AML1 (ETV6-RUNX1) (1) ...
Number of Cases
231
Case Sex
Female (93); Male (136); Unknown (2)
Case Age At Diagnosis
0 to 4 years (61); 5 to 9 years (28); 10 to 14 years (54); 15 to 19 years (41); 20 to 24 years (17); 25 to 29 years (4); 30 to 34 years (3); 34 to 39 years (1); Greater than 39 years (2); Not Reported (26)
Published In
Project
Case Disease Diagnosis
Abdominal Fibromatosis (1); Acinar Cell Carcinoma (1); Acute Erythroid Leukemia (1); Acute Leukemia, NOS (1); Acute Monocytic Leukemia (2); Acute Myeloid Leukemia with Abnormal Marrow Eosinophils (1); Acute Myeloid Leukemia with Myelodysplasia-Related Changes (2); Acute Myeloid Leukemia, Minimal Differentiation (1); Acute Myeloid Leukemia, NOS (20); Acute Myeloid Leukemia, T(8;21)(Q22;Q22) (1) ...
Number of Cases
611
Case Sex
Female (278); Male (333)
Case Age At Diagnosis
0 to 4 years (212); 5 to 9 years (126); 10 to 14 years (143); 15 to 19 years (114); 20 to 24 years (16)
Project
Case Disease Diagnosis
Juvenile Myelomonocytic Leukemia (188)
Number of Cases
188
Case Sex
Female (67); Male (120); Unknown (1)
Case Age At Diagnosis
0 to 4 years (142); 5 to 9 years (32); 10 to 14 years (4); 25 to 29 years (2); Pediatric and Young Adult (<40 years) (8)
Published In
Project
Case Disease Diagnosis
Adenoma, NOS (6); Astrocytoma, benign (335); Astrocytoma, NOS (164); Atypical teratoid/rhabdoid tumor (82); Cavernous hemangioma (8); Central Neurocytoma (1); Chordoma (including poorly differentiated chordoma) (7); Chordoma, NOS (4); Choroid plexus carcinoma (10); Choroid plexus papilloma, NOS (28) ...
Number of Cases
3,937
Case Sex
Female (1,919); Male (2,018)
Case Age At Diagnosis
0 to 4 years (744); 5 to 9 years (728); 10 to 14 years (756); 15 to 19 years (485); 20 to 24 years (132); 25 to 29 years (39); 30 to 34 years (20); 35 to 39 years (9); Greater than 39 years (37); Pediatric and Young Adult (<40 years) (200)
Project
Case Disease Diagnosis
Acinar cell carcinoma (1); Acute leukemia, NOS (90); Acute myeloid leukemia, NOS (44); Adenocarcinoma, NOS (1); Adenoid cystic carcinoma (1); Alveolar soft part sarcoma (2); Anaplastic large cell lymphoma, T-cell and Null-cell type (1); Astrocytoma, anaplastic, NOS (1); Astrocytoma, NOS (1); Atypical teratoid/rhabdoid tumor (4) ...
Number of Cases
1,036
Case Sex
Female (448); Male (561); Not Reported (30)
Case Age At Diagnosis
0 to 4 years (338); 5 to 9 years (182); 10 to 14 years (219); 15 to 19 years (155); 20 to 24 years (14); 25 to 29 years (1); 30 to 34 years (1); 35 to 39 years (1); Pediatric and Young Adult (<40 years) (128)
Published In
Project
Case Disease Diagnosis
Acute megakaryoblastic leukemia (1); Acute monocytic leukemia (1); Acute myeloid leukemia (megakaryoblastic) with t(1;22)(p13;q13); RBM15-MKL1 (1); Acute myeloid leukemia with abnormal marrow eosinophils (1); Acute myeloid leukemia with biallelic mutation of CEBPA (2); Acute myeloid leukemia with mutated NPM1 (2); Acute myeloid leukemia, 11q23 abnormalities (3); Acute myeloid leukemia, NOS (7); Acute myeloid leukemia, t(8;21)(q22;q22) (3); Adrenal cortical adenoma, NOS (1) ...
Number of Cases
200
Case Sex
Female (89); Male (111)
Case Age At Diagnosis
0 to 4 years (92); 5 to 9 years (48); 10 to 14 years (38); 15 to 19 years (21); 20 to 24 years (1)
Project
Case Disease Diagnosis
Acute megakaryoblastic leukemia (1); Acute monocytic leukemia (4); Acute myeloid leukemia with biallelic mutation of CEBPA (1); Acute myeloid leukemia with mutated NPM1 (3); Acute myeloid leukemia without maturation (1); Acute myeloid leukemia, minimal differentiation (1); Acute myeloid leukemia, NOS (7); Acute myelomonocytic leukemia, NOS (1); Acute promyelocytic leukemia, t(15;17)(q22;q11-12) (2); B lymphoblastic leukemia/lymphoma with hyperdiploidy (4) ...
Number of Cases
104
Case Sex
Female (47); Male (57)
Case Age At Diagnosis
0 to 4 years (13); 5 to 9 years (10); 10 to 14 years (11); 15 to 19 years (6); 20 to 24 years (9); 25 to 29 years (8); 30 to 34 years (14); 35 to 39 years (9); Pediatric and Young Adult (<40 years) (24)
Project
Case Disease Diagnosis
Acinar Cell Carcinoma (1); Adenocarcinoma In Situ in Adenomatous Polyp (1); Adenocarcinoma, Metastatic, NOS (1); Adenocarcinoma, NOS (1); Adenosarcoma (1); Adrenal Cortical Carcinoma (3); Aggressive Fibromatosis (6); Alveolar Rhabdomyosarcoma (17); Alveolar Soft Part Sarcoma (1); Angiocentric Glioma (2) ...
Number of Cases
835
Case Sex
Female (366); Male (469)
Case Age At Diagnosis
0 to 4 years (318); 5 to 9 years (154); 10 to 14 years (186); 15 to 19 years (128); 20 to 24 years (23); 25 to 29 years (4); Pediatric and Young Adult (<40 years) (22)
Project
Case Disease Diagnosis
Abdominal fibromatosis (4); Acinar cell carcinoma (5); Acute leukemia, NOS (1); Acute myelomonocytic leukemia, NOS (1); Adenocarcinoma in adenomatous polyposis coli (1); Adenocarcinoma, metastatic, NOS (4); Adenocarcinoma, NOS (12); Adenoid cystic carcinoma (2); Adenoma, NOS (1); Adrenal cortical adenoma, NOS (1) ...
Number of Cases
4,994
Case Sex
Female (2,297); Male (2,697)
Case Age At Diagnosis
0 to 4 years (1,294); 5 to 9 years (1,033); 10 to 14 years (1,118); 15 to 19 years (899); 20 to 24 years (115); 25 to 29 years (7); 30 to 34 years (1); Pediatric and Young Adult (<40 years) (1)
Project
Case Disease Diagnosis
B Lymphoblastic Leukemia/Lymphoma, NOS (31); T Lymphoblastic Leukemia/Lymphoma (9)
Number of Cases
40
Case Sex
Female (17); Male (22); Not Reported (1)
Case Age At Diagnosis
0 to 4 years (20); 5 to 9 years (10); 10 to 14 years (7); 15 to 19 years (2); Pediatric and Young Adult (<40 years) (1)
Project
Case Disease Diagnosis
T Lymphoblastic Leukemia/Lymphoma (43)
Number of Cases
43
Case Sex
Female (14); Male (29)
Case Age At Diagnosis
0 to 4 years (5); 5 to 9 years (15); 10 to 14 years (9); 15 to 19 years (10); 25 to 29 years (1); Pediatric and Young Adult (<40 years) (3)
Published In
Project
Case Disease Diagnosis
Neurofibromatosis, NOS (29)
Number of Cases
29
Case Sex
Female (16); Male (13)
Case Age At Diagnosis
Pediatric and Young Adult (<40 years) (29)
Published In
Project