Table 1.
Contents of the PAOs’ Websites
| Yes | No | Others | ||||
|---|---|---|---|---|---|---|
| Information Category | n | (%) | n | (%) | n | (%) |
| Link to clinical trial database | 4 | (8) | 45 | (92) | 0 | (0) |
| 1 | (10) | 9 | (90) | 0 | (0) | |
| PAO's own clinical trial finder or list of clinical trials | 15 | (31) | 33 | (67) | 1a | (2) |
| 5 | (50) | 5 | (50) | 0 | (0) | |
| PAO's patient registry rather than trial finder | 9 | (18) | 36 | (73) | 4b | (8) |
| 2 | (20) | 8 | (80) | 0 | (0) | |
| Lists of investigational drugs for clinical trials or preapproval access pathway | 9 | (18) | 40 | (82) | 0 | (0) |
| 2 | (20) | 8 | (80) | 0 | (0) | |
| Information on patient‐requested therapy system, expanded trial | 2 | (4) | 46 | (94) | 1c | (2) |
| 1 | (10) | 9 | (90) | 0 | (0) | |
| Position/Commentary on preapproval access pathway | 4 | (8) | 45 | (92) | 0 | (0) |
| 1 | (10) | 9 | (90) | 0 | (0) | |
| MHLW or PMDA resources provided | 1 | (2) | 41 | (84) | 7d | (14) |
| 0 | (0) | 10 | (100) | 0 | (0) | |
MHLW, Ministry of Health, Labour and Welfare; PAO, patient advocacy organization; PMDA, Pharmaceuticals and Medical Devices Agency
The number of PAOs’ websites in general is in the upper row (N = 49); that of PAOs’ websites in cancer area is in the lower row (n = 10).
One PAO provided a broken link in a tab showing “a list of clinical trials.”
PAOs recruited participants to clinical research other than clinical trials, such as biobanking.
One PAO provided information on a specific committee at MHLW to call for requests for research and development of unapproved drugs in Japan.
PAOs had links to the home page of MHLW, PMDA, or the page of a specific committee, not the specific page providing information on preapproval access pathways.