Core area | Outcome domain | At least once, nr of registries (%) | Median number of outcome measures per registry (range) |
---|---|---|---|
Death | 1. Mortality/survival | 35 (56) | 6 (1 to 49) |
Physiological/clinical | Any physiological/clinical domain 2–24 | 62 (98) | 47 (4 to 427) |
2. Blood and lymphatic system outcomes | 18 (29) | 1 (1 to 5) | |
3. Cardiac outcomes | 28 (44) | 2.5 (1 to 151) | |
4. Congenital, familial, and genetic outcomes | 4 (6) | 1 (1 to 1) | |
5. Endocrine outcomes | 8 (13) | 2 (1 to 7) | |
6. Ear and labyrinth outcomes | 8 (13) | 1 (1 to 6) | |
7. Eye outcomes | 14 (22) | 2 (1 to 87) | |
8. Gastrointestinal outcomes | 27 (43) | 3 (1 to 54) | |
9. General outcomes | 48 (76) | 5 (1 to 46) | |
10. Hepatobiliary outcomes | 13 (21) | 2 (1 to 46) | |
11. Immune system outcomes | 19 (30) | 2 (1 to 28) | |
12. Infection and infestation outcomes | 30 (48) | 2 (1 to 23) | |
13. Injury and poisoning outcomes | 9 (14) | 1 (1 to 6) | |
14. Metabolism and nutrition outcomes | 12 (19) | 1 (1 to 40) | |
15. Musculoskeletal and connective tissue outcomes | 25 (40) | 3 (1 to 134) | |
16. Outcomes relating to neoplasms: benign, malignant, and unspecified | 25 (40) | 13 (1 to 34) | |
17. Nervous system outcomes | 33 (52) | 2 (1 to 126) | |
18. Pregnancy, puerperium, and perinatal outcomes | 7 (11) | 1 (1 to 2) | |
19. Renal and urinary outcomes | 25 (40) | 4 (1 to 64) | |
20. Reproductive system and breast outcomes | 11 (17) | 4 (1 to 31) | |
21. Psychiatric outcomes | 10 (16) | 4.5 (1 to 29) | |
22. Respiratory, thoracic, and mediastinal outcomes | 25 (40) | 3 (1 to 234) | |
23. Skin and subcutaneous tissue outcomes | 30 (48) | 1,5 (1 to 45) | |
24. Vascular outcomes | 39 (62) | 5 (1 to 34) | |
Life impact | Any life impact domain 25–33 | 58 (92) | 13 (4 to 361) |
Any functioning domain 25–29 | 39 (62) | 23 (2 to 312) | |
25. Physical functioning | 37 (59) | 11 (1 to 239) | |
26. Social functioning | 23 (37) | 3 (1 to 36) | |
27. Role functioning | 31 (49) | 3 (1 to 16) | |
28. Emotional functioning/well-being | 22 (35) | 7 (1 to 70) | |
29. Cognitive functioning | 22 (35) | 3 (1 to 30) | |
30. Global quality of life | 3 (5) | 1 (1 to 2) | |
31. Perceived health status | 22 (35) | 4 (1 to 32) | |
32. Delivery of care | 53 (84) | 4 (1 to 58) | |
33. Personal circumstances | 18 (29) | 1 (1 to 28) | |
Resource use | Any resource use domain 34–37 | 63 (100) | 37 (5 to 233) |
34. Economic | 27 (43) | 4 (1 to 73) | |
35. Hospital | 48 (76) | 3.5 (1 to 14) | |
36. Need for further intervention | 63 (100) | 35 (4 to 225) | |
37. Societal/carer burden | 9 (14) | 2 (1 to 49) | |
Adverse events | 38. Adverse events/effects | 55 (87) | 6 (1 to 30) |