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Table 1 Trial characteristics

From: Access to routinely collected health data for clinical trials – review of successful data requests to UK registries

Trial characteristic

Summary extraction: 2013–16, n (%)

n = 69

Detailed extraction: 2017–18, n (%)

n = 91

Total,

n (%)

n = 160

Purpose

 Screening

6 (9%)

10 (11%)

16 (10%)

 Treatment

51 (74%)

65 (71%)

116 (73%)

 Primary prevention

12 (17%)

16 (18%)

28 (18%)

Feasibility/Pilot trial

 Yes

6 (9%)

11 (12%)

17 (11%)

 No

63 (91%)

80 (88%)

143 (89%)

Recruitment setting

 Primary care

23 (33%)

18 (20%)

41 (26%)

 Secondary care

46 (67%)

73 (80%)

119 (74%)

Disease category

 Cancer

17 (25%)

30 (33%)

47 (29%)

 Cardiovascular and stroke

21 (30%)

25 (27%)

46 (29%)

 Pregnancy and childbirth

4 (6%)

5 (5%)

9 (6%)

 Mental/neurological health

6 (9%)

6 (7%)

12 (8%)

 Infection

5 (7%)

3 (3%)

8 (5%)

 Endocrine and diabetes

1 (1%)

3 (3%)

4 (3%)

 Inflammatory disorder

2 (3%)

3 (3%)

5 (3%)

 Other

13 (19%)

16 (18%)

29 (18%)

Intervention

 Drug

38 (55%)

38 (42%)

76 (48%)

 Surgical

5 (7%)

8 (9%)

13 (8%)

 Other

26 (38%)

45 (49%)

71 (44%)

Primary outcome

 Survival related

33 (48%)

39 (43%)

72 (45%)

 Other

36 (52%)

52 (57%)

88 (55%)

Randomisation

 Individual

61 (88%)

75 (82%)

136 (85%)

 Cluster

8 (12%)

16 (18%)

24 (15%)

Trial size

Median

1103

2611

1590

Range

41–170,432

53–6,000,000

41–6,000,000

 1–500

21 (30%)

20 (22%)

41 (26%)

 500–5000

31 (45%)

43 (47%)

74 (46%)

  >5000

17 (25%)

25 (27%)

42 (26%)

 Unclear

0 (0%)

3 (3%)

3 (2%)

International accrual

 Yes

13 (19%)

19 (21%)

32 (20%)

 No (UK only)

56 (81%)

69 (76%)

125 (78%)

 Unclear

0 (0%)

3 (3%)

3 (2%)

Coordinated by registered clinical trials unit

 Yes

40 (58%)

63 (69%)

103 (64%)

 No

10 (14%)

12 (13%)

22 (14%)

 Unclear

19 (28%)

16 (18%)

35 (22%)

Highest profile journal (if primary report published)

BMJ

NA

2 (2%)

2 (1%)

JAMA

NA

6 (7%)

6 (4%)

Lancet

NA

16 (18%)

16 (10%)

Lancet-specialty

NA

2 (2%)

2 (1%)

NEJM

NA

3 (3%)

3 (2%)

 Other

NA

6 (7%)

6 (4%)

 Not yet published

NA

56 (62%)

56 (35%)

 Not captured

69 (100%)

NA

69 (43%)