The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer

Table 4 Epidemiology data and biospecimen collection for probands and relatives from all sites (1996–2003), by ascertainment source

Parameter	Population-based families		Clinic-based families		Total families
	Probands	Relatives	Probands	Relatives
Affected probands and relatives^a	6126	22,857	1647	4943	35,573
Affected (breast only)	6098	1856	1602	694	10,250
Affected (ovarian only)	0	158	0	81	239
Affected (breast and ovarian)	28	24	45	25	122
With epidemiology questionnaire	5250	10,535	1529	2857	20,171
With short proxy epidemiology questionnaire	0	11,155	0	1821	12,976
With blood sample	4429	6293	1524	2204	14,450
With mouthwash sample	357	483	6	31	877
With tumor tissue^b	2675	437	630	151	3893
Unaffected probands and relatives^a	2990	7229	1187	3321	14,727
With epidemiology questionnaire	2979	1387	1137	1747	7250
With short proxy epidemiology questionnaire	0	5842	0	1185	7027
With blood sample	1797	14	1108	1731	4650
With mouthwash sample	58	0	3	7	68
With tumor tissue^b	0	1	17	382	400
All probands and relatives^a	9116	30,086	2834	8264	50,300
With epidemiology questionnaire	8229	11,922	2666	4604	27,421
With short proxy epidemiology questionnaire	0	16,997	0	3006	20,003
With blood sample	6226	6307	2632	3935	19,100
With mouthwash sample	415	483	9	38	945
With tumor tissue^b	2675	438	647	533	4293

^aProbands with completed family history questionnaire; relatives with epidemiology data, blood or mouthwash sample, or tumor block. ^bTumor tissue for breast or ovarian cancer.

ISSN: 1465-542X