Characteristic Total All regsiteries Combined BRCA Registry Lynch Registry Rare Registry
N = 8491 Newly Identified, N = 4411 Previously Identified, N = 4081 N Newly Identified, N = 4271 Previously Identified, N = 3981 N Newly Identified, N = 3541 Previously Identified, N = 3551 N Newly Identified, N = 1011 Previously Identified, N = 641
Sex 825 709 165
    Female 720 (85%) 370 (51%) 350 (49%) 356 (51%) 341 (49%) 303 (50%) 304 (50%) 81 (59%) 56 (41%)
    Male 129 (15%) 71 (55%) 58 (45%) 71 (55%) 57 (45%) 51 (50%) 51 (50%) 20 (71%) 8 (29%)
Lynch Syndrome Risk Group 709 (84%) 354 (50%) 355 (50%) 825 340 (50%) 345 (50%) 709 354 (50%) 355 (50%) 165 14 (56%) 11 (44%)
BRCA Risk Group 825 (97%) 427 (52%) 398 (48%) 825 427 (52%) 398 (48%) 709 340 (50%) 345 (50%) 165 87 (62%) 54 (38%)
In Rare Disease_Group 165 (19%) 101 (61%) 64 (39%) 825 87 (62%) 54 (38%) 709 14 (56%) 11 (44%) 165 101 (61%) 64 (39%)
excluded due to having referrals 825 709 165
    0 817 (96%) 441 (54%) 376 (46%) 427 (54%) 370 (46%) 354 (52%) 327 (48%) 101 (64%) 56 (36%)
    1 32 (3.8%) 0 (0%) 32 (100%) 0 (0%) 28 (100%) 0 (0%) 28 (100%) 0 (0%) 8 (100%)
excluded due to having Genetic Counseling 825 709 165
    0 509 (60%) 441 (87%) 68 (13%) 427 (87%) 66 (13%) 354 (85%) 62 (15%) 101 (93%) 8 (7.3%)
    1 340 (40%) 0 (0%) 340 (100%) 0 (0%) 332 (100%) 0 (0%) 293 (100%) 0 (0%) 56 (100%)
Has Colorectal Adenocarcinoma Diagnosis 129 (15%) 55 (43%) 74 (57%) 825 54 (43%) 72 (57%) 709 54 (42%) 74 (58%) 165 2 (50%) 2 (50%)
Has Endometrial Adenocarcinoma Diagnosis 147 (17%) 87 (59%) 60 (41%) 825 75 (57%) 56 (43%) 709 87 (60%) 58 (40%) 165 12 (63%) 7 (37%)
Y Has Pheochromocytoma Diagnosis 825 709 165
    0 821 (97%) 424 (52%) 397 (48%) 410 (51%) 388 (49%) 354 (50%) 354 (50%) 84 (61%) 53 (39%)
    1 28 (3.3%) 17 (61%) 11 (39%) 17 (63%) 10 (37%) 0 (0%) 1 (100%) 17 (61%) 11 (39%)
Y Has Diffuse Gastric Cancer Diagnosis 825 709 165
    0 846 (100%) 441 (52%) 405 (48%) 427 (52%) 396 (48%) 354 (50%) 354 (50%) 101 (62%) 61 (38%)
    1 3 (0.4%) 0 (0%) 3 (100%) 0 (0%) 2 (100%) 0 (0%) 1 (100%) 0 (0%) 3 (100%)
Y Has Adrenocortical Carcinoma Diagnosis 825 709 165
    0 847 (100%) 439 (52%) 408 (48%) 426 (52%) 398 (48%) 353 (50%) 355 (50%) 99 (61%) 64 (39%)
    1 2 (0.2%) 2 (100%) 0 (0%) 1 (100%) 0 (0%) 1 (100%) 0 (0%) 2 (100%) 0 (0%)
Y Has Exocrine Pancreatic Cancer Diagnosis 825 709 165
    0 812 (96%) 418 (51%) 394 (49%) 404 (51%) 384 (49%) 331 (49%) 342 (51%) 101 (62%) 63 (38%)
    1 37 (4.4%) 23 (62%) 14 (38%) 23 (62%) 14 (38%) 23 (64%) 13 (36%) 0 (0%) 1 (100%)
Y Has Metastatic Prostate Cancer Diagnosis 825 709 165
    0 846 (100%) 438 (52%) 408 (48%) 424 (52%) 398 (48%) 353 (50%) 355 (50%) 99 (61%) 64 (39%)
    1 3 (0.4%) 3 (100%) 0 (0%) 3 (100%) 0 (0%) 1 (100%) 0 (0%) 2 (100%) 0 (0%)
Y Has Ovarian/Fallopian Tube/Peritoneal Diagnosis 825 709 165
    0 800 (94%) 419 (52%) 381 (48%) 405 (52%) 371 (48%) 333 (50%) 329 (50%) 100 (61%) 63 (39%)
    1 49 (5.8%) 22 (45%) 27 (55%) 22 (45%) 27 (55%) 21 (45%) 26 (55%) 1 (50%) 1 (50%)
Y Has Ocular Melanoma Diagnosis 825 709 165
    0 822 (97%) 421 (51%) 401 (49%) 407 (51%) 391 (49%) 354 (50%) 355 (50%) 81 (59%) 57 (41%)
    1 27 (3.2%) 20 (74%) 7 (26%) 20 (74%) 7 (26%) 20 (74%) 7 (26%)
Y Has Male Breast Cancer Metric 825 709 165
    0 843 (99%) 438 (52%) 405 (48%) 424 (52%) 395 (48%) 353 (50%) 353 (50%) 99 (61%) 63 (39%)
    1 6 (0.7%) 3 (50%) 3 (50%) 3 (50%) 3 (50%) 1 (33%) 2 (67%) 2 (67%) 1 (33%)
Y Has Sarcoma Diagnosis 825 709 165
    0 782 (92%) 400 (51%) 382 (49%) 398 (51%) 379 (49%) 342 (50%) 347 (50%) 60 (61%) 38 (39%)
    1 67 (7.9%) 41 (61%) 26 (39%) 29 (60%) 19 (40%) 12 (60%) 8 (40%) 41 (61%) 26 (39%)
Y Has Renal Cancer Diagnosis 825 709 165
    0 836 (98%) 438 (52%) 398 (48%) 424 (52%) 389 (48%) 354 (50%) 354 (50%) 98 (64%) 54 (36%)
    1 13 (1.5%) 3 (23%) 10 (77%) 3 (25%) 9 (75%) 0 (0%) 1 (100%) 3 (23%) 10 (77%)
Y Has Medullary Thyroid Cancer Diagnosis 825 709 165
    0 842 (99%) 436 (52%) 406 (48%) 422 (52%) 396 (48%) 354 (50%) 355 (50%) 96 (61%) 62 (39%)
    1 7 (0.8%) 5 (71%) 2 (29%) 5 (71%) 2 (29%) 5 (71%) 2 (29%)
Y Has Paraganglioma Diagnosis 825 709 165
    0 829 (98%) 428 (52%) 401 (48%) 415 (51%) 392 (49%) 353 (50%) 354 (50%) 88 (61%) 57 (39%)
    1 20 (2.4%) 13 (65%) 7 (35%) 12 (67%) 6 (33%) 1 (50%) 1 (50%) 13 (65%) 7 (35%)
Y Has Triple Negative Breast Cancer Metric 825 709 165
    0 847 (100%) 441 (52%) 406 (48%) 427 (52%) 396 (48%) 354 (50%) 355 (50%) 101 (62%) 62 (38%)
    1 2 (0.2%) 0 (0%) 2 (100%) 0 (0%) 2 (100%) 0 (0%) 2 (100%)
Has Breast and Ovarian Gene Mutation Diagnosis (Negative) 12 (1.4%) 0 (0%) 12 (100%) 825 0 (0%) 12 (100%) 709 0 (0%) 11 (100%) 165 0 (0%) 1 (100%)
Has Breast and Ovarian Gene Mutation Diagnosis (Positive) 113 (13%) 0 (0%) 113 (100%) 825 0 (0%) 109 (100%) 709 0 (0%) 107 (100%) 165 0 (0%) 10 (100%)
Patients with 1st degree relatives with early onset of breast cancer 825 709 165
    0 646 (76%) 309 (48%) 337 (52%) 309 (48%) 337 (52%) 238 (45%) 290 (55%) 71 (60%) 48 (40%)
    1 77 (9.1%) 45 (58%) 32 (42%) 45 (58%) 32 (42%) 44 (59%) 30 (41%) 1 (33%) 2 (67%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Patients with a male relative (1st & 2nd degree) diagnosed with breast cancer (no age restriction) 825 709 165
    0 694 (82%) 334 (48%) 360 (52%) 334 (48%) 360 (52%) 263 (46%) 313 (54%) 71 (60%) 48 (40%)
    1 29 (3.4%) 20 (69%) 9 (31%) 20 (69%) 9 (31%) 19 (73%) 7 (27%) 1 (33%) 2 (67%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Patients with 1st & 2nd degree relatives diagnosed with Ovarian Cancer (no age restriction) 825 709 165
    0 550 (65%) 236 (43%) 314 (57%) 236 (43%) 314 (57%) 189 (41%) 267 (59%) 47 (50%) 47 (50%)
    1 173 (20%) 118 (68%) 55 (32%) 118 (68%) 55 (32%) 93 (64%) 53 (36%) 25 (89%) 3 (11%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Patient has any prostate cancer and 2 or more FamHx of Breast or Prostate Cancer Dx any age 1st & 2nd degree relatives 825 709 165
    0 722 (85%) 353 (49%) 369 (51%) 353 (49%) 369 (51%) 281 (47%) 320 (53%) 72 (59%) 50 (41%)
    1 1 (0.1%) 1 (100%) 0 (0%) 1 (100%) 0 (0%) 1 (100%) 0 (0%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Patients with 1st degree relatives diagnosed with Pancreatic Cancer (no age restriction) 825 709 165
    0 647 (76%) 305 (47%) 342 (53%) 305 (47%) 342 (53%) 245 (45%) 298 (55%) 60 (57%) 45 (43%)
    1 76 (9.0%) 49 (64%) 27 (36%) 49 (64%) 27 (36%) 37 (63%) 22 (37%) 12 (71%) 5 (29%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Patients dx with Breast cancer between the age of 46-50 and has at least 1 female relative with breast cancer at any age 825 709 165
    0 709 (84%) 351 (50%) 358 (50%) 351 (50%) 358 (50%) 279 (47%) 309 (53%) 72 (59%) 50 (41%)
    1 14 (1.6%) 3 (21%) 11 (79%) 3 (21%) 11 (79%) 3 (21%) 11 (79%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Patients diagnosed with any prostate cancer and has family history of breast cancer dx before age 50 825 709 165
    0 723 (85%) 354 (49%) 369 (51%) 354 (49%) 369 (51%) 282 (47%) 320 (53%) 72 (59%) 50 (41%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
diagnosed w breast cancer over the age of 50 & has FH of breast cancer (F/M) dx < 50 or 2 or more dx at any age. 825 709 165
    0 677 (80%) 334 (49%) 343 (51%) 334 (49%) 343 (51%) 267 (47%) 297 (53%) 67 (59%) 47 (41%)
    1 46 (5.4%) 20 (43%) 26 (57%) 20 (43%) 26 (57%) 15 (39%) 23 (61%) 5 (63%) 3 (38%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Patients dx with Breast cancer at or before the age of 45 825 709 165
    0 649 (76%) 321 (49%) 328 (51%) 321 (49%) 328 (51%) 263 (47%) 297 (53%) 58 (64%) 32 (36%)
    1 74 (8.7%) 33 (45%) 41 (55%) 33 (45%) 41 (55%) 19 (45%) 23 (55%) 14 (44%) 18 (56%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Patients dx with Breast cancer at or before the age of 50 825 709 165
    0 632 (74%) 317 (50%) 315 (50%) 317 (50%) 315 (50%) 260 (48%) 284 (52%) 57 (64%) 32 (36%)
    1 91 (11%) 37 (41%) 54 (59%) 37 (41%) 54 (59%) 22 (38%) 36 (62%) 15 (45%) 18 (55%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Patients dx with Ovarian, Fallopian Tube or peritoneal cancer regardless of age 825 709 165
    0 674 (79%) 332 (49%) 342 (51%) 332 (49%) 342 (51%) 261 (47%) 294 (53%) 71 (59%) 49 (41%)
    1 49 (5.8%) 22 (45%) 27 (55%) 22 (45%) 27 (55%) 21 (45%) 26 (55%) 1 (50%) 1 (50%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Male patients dx with Breast Cancer regardless of age 825 709 165
    0 717 (84%) 351 (49%) 366 (51%) 351 (49%) 366 (51%) 281 (47%) 318 (53%) 70 (59%) 49 (41%)
    1 6 (0.7%) 3 (50%) 3 (50%) 3 (50%) 3 (50%) 1 (33%) 2 (67%) 2 (67%) 1 (33%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
PHFM Patients with family history of breast cancer gene mutation 825 709 165
    0 698 (82%) 351 (50%) 347 (50%) 351 (50%) 347 (50%) 280 (48%) 298 (52%) 71 (59%) 50 (41%)
    1 25 (2.9%) 3 (12%) 22 (88%) 3 (12%) 22 (88%) 2 (8.3%) 22 (92%) 1 (100%) 0 (0%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
PHFMPatients with family history of early onset breast cancer 825 709 165
    0 722 (85%) 354 (49%) 368 (51%) 354 (49%) 368 (51%) 282 (47%) 319 (53%) 72 (59%) 50 (41%)
    1 1 (0.1%) 0 (0%) 1 (100%) 0 (0%) 1 (100%) 0 (0%) 1 (100%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
PHFM Patients with family history of male breast cancer 825 709 165
    0 718 (85%) 353 (49%) 365 (51%) 353 (49%) 365 (51%) 281 (47%) 316 (53%) 72 (59%) 50 (41%)
    1 5 (0.6%) 1 (20%) 4 (80%) 1 (20%) 4 (80%) 1 (20%) 4 (80%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
PHFM Patients with family history of ovarian cancer 825 709 165
    0 603 (71%) 320 (53%) 283 (47%) 320 (53%) 283 (47%) 255 (51%) 242 (49%) 65 (61%) 42 (39%)
    1 120 (14%) 34 (28%) 86 (72%) 34 (28%) 86 (72%) 27 (26%) 78 (74%) 7 (47%) 8 (53%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
PHFM Patients with family history of Pancreatic cancer 825 709 165
    0 639 (75%) 343 (54%) 296 (46%) 343 (54%) 296 (46%) 275 (51%) 259 (49%) 68 (64%) 38 (36%)
    1 84 (9.9%) 11 (13%) 73 (87%) 11 (13%) 73 (87%) 7 (10%) 61 (90%) 4 (25%) 12 (75%)
    NULL 126 (15%) 87 (69%) 39 (31%) 73 (72%) 29 (28%) 72 (67%) 35 (33%) 29 (67%) 14 (33%)
Has CRC Diagnosed <50yo 825 709 165
    0 769 (91%) 404 (53%) 365 (47%) 391 (52%) 357 (48%) 317 (50%) 312 (50%) 100 (62%) 62 (38%)
    1 80 (9.4%) 37 (46%) 43 (54%) 36 (47%) 41 (53%) 37 (46%) 43 (54%) 1 (33%) 2 (67%)
Has EC Diagnosed <50yo 825 709 165
    0 736 (87%) 369 (50%) 367 (50%) 367 (50%) 361 (50%) 282 (47%) 314 (53%) 89 (60%) 59 (40%)
    1 113 (13%) 72 (64%) 41 (36%) 60 (62%) 37 (38%) 72 (64%) 41 (36%) 12 (71%) 5 (29%)
Y Colorectal Adenocarcinoma Diagnosis 825 709 165
    0 720 (85%) 386 (54%) 334 (46%) 373 (53%) 326 (47%) 300 (52%) 281 (48%) 99 (61%) 62 (39%)
    1 129 (15%) 55 (43%) 74 (57%) 54 (43%) 72 (57%) 54 (42%) 74 (58%) 2 (50%) 2 (50%)
Y Endometrial Adenocarcinoma Diagnosis 825 709 165
    0 702 (83%) 354 (50%) 348 (50%) 352 (51%) 342 (49%) 267 (47%) 297 (53%) 89 (61%) 57 (39%)
    1 147 (17%) 87 (59%) 60 (41%) 75 (57%) 56 (43%) 87 (60%) 58 (40%) 12 (63%) 7 (37%)
Y Has PH FH Lynch Syndrome Diagnosis 825 709 165
    0 847 (100%) 440 (52%) 407 (48%) 426 (52%) 397 (48%) 353 (50%) 354 (50%) 101 (61%) 64 (39%)
    1 2 (0.2%) 1 (50%) 1 (50%) 1 (50%) 1 (50%) 1 (50%) 1 (50%)
Y Has PH FH Ovarian Cancer Diagnosis 825 709 165
    0 729 (86%) 407 (56%) 322 (44%) 393 (56%) 312 (44%) 327 (54%) 277 (46%) 94 (63%) 56 (37%)
    1 120 (14%) 34 (28%) 86 (72%) 34 (28%) 86 (72%) 27 (26%) 78 (74%) 7 (47%) 8 (53%)
Y Has PH FH Pancreatic Cancer Diagnosis 825 709 165
    0 765 (90%) 430 (56%) 335 (44%) 416 (56%) 325 (44%) 347 (54%) 294 (46%) 97 (65%) 52 (35%)
    1 84 (9.9%) 11 (13%) 73 (87%) 11 (13%) 73 (87%) 7 (10%) 61 (90%) 4 (25%) 12 (75%)
Y Lynch Syndrome Diagnosis 825 709 165
    0 721 (85%) 441 (61%) 280 (39%) 427 (61%) 275 (39%) 354 (61%) 227 (39%) 101 (63%) 59 (37%)
    1 128 (15%) 0 (0%) 128 (100%) 0 (0%) 123 (100%) 0 (0%) 128 (100%) 0 (0%) 5 (100%)
Y Lynch Syndrome Family Cancer History 825 709 165
    0 600 (71%) 282 (47%) 318 (53%) 269 (46%) 310 (54%) 195 (42%) 265 (58%) 100 (62%) 62 (38%)
    1 249 (29%) 159 (64%) 90 (36%) 158 (64%) 88 (36%) 159 (64%) 90 (36%) 1 (33%) 2 (67%)
Y Number of 1st Degree Relatives with Colon Cancer <50 825 709 165
    1 175 (21%) 110 (63%) 65 (37%) 110 (63%) 65 (37%) 110 (63%) 65 (37%)
    2 2 (0.2%) 1 (50%) 1 (50%) 1 (50%) 1 (50%) 1 (50%) 1 (50%)
    NULL 672 (79%) 330 (49%) 342 (51%) 316 (49%) 332 (51%) 243 (46%) 289 (54%) 101 (61%) 64 (39%)
Y Number of 1st Degree Relatives with Edometrial Cancer <50 825 709 165
    1 9 (1.1%) 6 (67%) 3 (33%) 6 (67%) 3 (33%) 6 (67%) 3 (33%)
    NULL 840 (99%) 435 (52%) 405 (48%) 421 (52%) 395 (48%) 348 (50%) 352 (50%) 101 (61%) 64 (39%)
FInal_race 825 709 165
    AA 63 (7.4%) 41 (65%) 22 (35%) 39 (65%) 21 (35%) 33 (65%) 18 (35%) 10 (67%) 5 (33%)
    H 97 (11%) 55 (57%) 42 (43%) 50 (55%) 41 (45%) 48 (55%) 39 (45%) 12 (71%) 5 (29%)
    NHW 636 (75%) 321 (50%) 315 (50%) 314 (50%) 308 (50%) 258 (49%) 272 (51%) 70 (58%) 50 (42%)
    Other 53 (6.2%) 24 (45%) 29 (55%) 24 (46%) 28 (54%) 15 (37%) 26 (63%) 9 (69%) 4 (31%)
Age_Cat 825 709 165
    Early 278 (33%) 149 (54%) 129 (46%) 140 (54%) 121 (46%) 117 (52%) 108 (48%) 41 (58%) 30 (42%)
    Middle 360 (42%) 174 (48%) 186 (52%) 170 (48%) 184 (52%) 145 (47%) 164 (53%) 33 (58%) 24 (42%)
    Old 211 (25%) 118 (56%) 93 (44%) 117 (56%) 93 (44%) 92 (53%) 83 (47%) 27 (73%) 10 (27%)
visit_Cat 823 706 164
    Heavy 670 (79%) 325 (49%) 345 (51%) 319 (49%) 336 (51%) 251 (46%) 296 (54%) 80 (58%) 59 (42%)
    Ocasisonal 49 (5.8%) 34 (69%) 15 (31%) 33 (69%) 15 (31%) 30 (70%) 13 (30%) 5 (71%) 2 (29%)
    Regular 127 (15%) 80 (63%) 47 (37%) 73 (61%) 47 (39%) 71 (61%) 45 (39%) 16 (89%) 2 (11%)
    Unknown 3 2 1 2 0 2 1 0 1
gen_status
    Newly Identified 441 (52%)
    Previously Identified 408 (48%)
1 n (%)