Table 1 Registration items in the HBOC registration system

From: Genetic and clinical characteristics in Japanese hereditary breast and ovarian cancer: first report after establishment of HBOC registration system in Japan

Basic information for the subject or other family members
1. Family relationship, 2.Gender, 3. Race
 4. Father’s individual number, 5. Mother’s individual number (number issued by this system)
6. Date of birtha
 7. Date of death, 8. Age at death, 9. Cause of death, 10. History of cancers
11. Menopausal state, 12. Menopausal age, 13. Age at menarche, 14. Times of childbirth, 15. Age at first childbirth
Information on breast cancerb
16. Onset age of breast cancer
17. Single or multiple, unilateral or bilateral, 18. Site (right or left), distant metastasis
19. Modality of diagnosis (trigger of finding a lesion)
20. Medical treatment (surgery, preoperative chemotherapy, post-operative chemotherapy, preoperative hormone therapy, post-operative hormone therapy, molecular-targeted drug, radiotherapy, no treatment)
21. Operation procedure, 22. Operation date
23. Histology, 24. Pathological tumor size (clinical tumor size), 25. Number of lymph node positive for cancer, 26. ER, 27. PGR, 28. HER2 (IHC), 29. HER2 (FISH)
 30. Ki67 score, 31. Epithelial marker, 32. Nuclear grade (NG)
Information on ovarian cancer
33. Onset age of ovarian cancer
34. Ovarian cancer, tubal cancer, peritoneal cancer
35. Histology, 36. Stage, 37. Degree of differentiation for cancer, 38. Metastatic sites
39. Date medical treatment was started, 40. Operation date, 41. Radicality
42. Date of detection of first recurrence
Effect of chemotherapy for ovarian cancer
43. Preoperative chemotherapy, 44. Regimen, 45. Best effect
Post-operative chemotherapyc
46. Regimen, 47. Period from completion of the last regimen to the recurrence, 48. Best effect, 49. Progression-free period
Other cancers than breast and ovary (all cancers should be described if patients have a history of plural cancers)
50. Type of other cancers, 51. Onset age
52. Other history associated with HBOC
Information on genetic tests
53. Date of genetic test for BRCA, 54.Type of examination, source of genetic test (company, medical institute, etc.), 55. Purpose of genetic test
56. Mutation of BRCA1, Mutation sited (DNA and protein), 57. Mutation of BRCA2, mutation sited (DNA and protein)
Information on prophylactic surgery of the breast and the ovary
58. Risk-reducing mastectomy (RRM), 59. Operation procedure for RRM, 60. Pathological findings of the resected specimen, 61. Execution age of RRM
62. Risk-reducing salpingo-oophorectomy (RRSO), 63. Operation procedure for RRSO, 64. Pathological findings of the resected specimen, 65. Execution age of RRSO
Information on visiting a hospital
66. First consultation at the hospital, 67. Final consultation at the hospital
  1. Bold characteristics indicate essential registration items for all subjects. Italic characteristics indicate essential registration items for BRCA mutation carriers. No. 1, 16, 33, 50, and 51 are essential registration items for registrees within the second relatives of the subject or uncles, who suffered from any cancers and registered by interview-based information (they are defined as the Others in Table 2)
  2. aThe date is deleted at submission (only month and year are registered) for protection of individual information
  3. bWe can register up to the third breast cancer, if patients had suffered from it
  4. cWe can register up to the third regimen, if patients had received one
  5. dBased on the Myriad notation or HGVS notation