Cancer types with an indication for genetic counseling and testing were recently reviewed and incorporated in a CPS-questionnaire currently used in Germany to identify patients with an indication for a genetic evaluation (see supplement to Ref. [
6]). The list of cancer types falling into this category was created by the cancer predisposition working group of the German Society for Pediatric Oncology and Hematology and was based on recommendations from various cancer trial groups. The list shares large overlaps with a similar list generated independently by Postema et al. [
4] who created a list of cancer types that warrant a genetic evaluation because at least 5% of cases are associated with a CPS. The number of patients with the following cancer types diagnosed in Germany between January 1st 2007 and December 31st 2016 were retrieved from the pediatric cancer pathology reference laboratories of the German Society of Oncology and Hematology (GPOH) in Bonn where generally all cases of childhood tumors are reviewed centrally: adrenocortical adenoma, adrenocortical carcinoma, atypical teratoid/rhabdoid tumor, botryoid rhabdomyosarcoma of the genitourinary tract, choroid plexus carcinoma, colorectal carcinoma, cystic nephroma, fetal rhabdomyoma, gastrointestinal stromal tumor, giant cell glioblastoma, gonadoblastoma, hemangioblastoma, hepatocellular carcinoma, infantile myofibromatosis, large cell calcifying Sertoli-cell-tumor, malignant peripheral nerve sheath tumor, medullary renal cell carcinoma, medullary thyroid carcinoma, medulloepithelioma, melanoma, meningioma, myxoma, neuroendocrine tumor (excluding carcinoid of the appendix), optic pathway glioma, parathyroid adenoma, pheochromocytoma, pilocytic astrocytoma with signs of neurofibromatosis type 1, pineoblastoma, pituitary adenoma/tumor, pleuropulmonary blastoma, renal cell carcinoma, rhabdoid-tumor, anaplastic rhabdomyosarcoma, schwannoma, Sertoli-Leydig-cell-tumor, small cell carcinoma of the ovary hypercalcemic type, squamous cell carcinoma, subependymal giant cell astrocytoma, thyroid carcinoma (follicular), thyroid carcinoma (papillary), thyroid carcinoma (unclassified). In addition, the number of patients with the following cancer types diagnosed within the same 10-year period were retrieved from the annual report of the German Childhood Cancer Registry (GCCR) [
8]: myelodysplastic syndrome/juvenile myelomonocytic leukemia, and retinoblastoma.
The number of patients diagnosed in Germany within the same 10-year period with the following entities were calculated based on numbers provided in the annual report of the GCCR [
8] and the published percentage of cases with the defining features [
9‐
12]: medulloblastoma
SHH, medulloblastoma
WNT CTNNB1 wildtype, hepatoblastoma
CTNNB1 wildtype and acute myeloid leukemia (AML) with monosomy 7/aberration 7q. Finally, the number of patients diagnosed with hypodiploid ALL was provided by the ALL BFM and COALL trial groups (C.P.K. personal communication).
Beginning in 2009, the GCCR extended the upper age cut-off from 15 years to 18 years. According to the GCCR’s archived annual reports, 16,902 patients under the age of 18 years were diagnosed between years 2009 and 2016 (on average, 2112 patients per year). Based on this number, we estimate that 21,127 patients under the age of 18 years were diagnosed with cancer between January 1st 2007 and December 31st 2016. The study was approved by the ethical review board at Hannover Medical School.