Characteristics of the individuals included in the survival analysis and degree of information validation
| Birth year | No. of individuals (male:female ratio) | No. of living and deceased individuals on 1 January 2016 Median age (at death) (range) | Information about vHL status obtained from: registers (R) or family interviews (F)* |
|---|---|---|---|
| Patients with vHL | |||
| Born 1840–1900 | 11 (7:4) | 11 deceased Median age at death: 49 years (28–64 years) 0 living | R: 9 F: 2 |
| Born 1901–1955 | 59 (26:33) | 50 deceased Median age at death: 43.5 years (12–88 years) 9 living Median age: 66 years (61–72 years) | R: 57 F: 2 |
| Born 1956–2010 | 73 (36:37) | 6 deceased Median age at death: 46.5 years (34–53 years) 67 living Median age: 35 years (6–59 years) | R: 72 F: 1 |
| Total | 143 (69:74) | 67 deceased Median age at death: 45 years (12–88 years) 76 living Median age: 38.5 years (6–72 years) | R: 138 F: 5 |
| Non-vHL siblings | |||
| Born 1840–1900 | 2 (0:2) | 2 deceased Ages at death: 69 and 85 years | R: 2 F: 0 |
| Born 1901–1955 | 76 (41:35) | 46 deceased Median age at death: 69 years (18–93 years) 30 living Median age: 67 years (61–99 years) | R: 66 F: 10 |
| Born 1956–2010 | 59 (32:27) | 59 living Median age: 44 years (7–60 years) | R: 36 F: 23 |
| Total | 137 (73:64) | 48 deceased Median age at death: 68.5 years (18–93 years) 89 living Median age: 54 years (7–99 years) | R: 104 F: 33 |
*R: Information confirmed in medical records/registers. This includes hospital records (including imaging and pathology reports), autopsy reports and data from the Danish Patient Register, the Death register/Death certificates, the Cancer Register and the national vHL research database. F: Information only from family interview.
vHL, von Hippel-Lindau disease.