Table 3 Reported interest for proposed research database features: high interest (8–10/10) vs Low interest (1–3/10)
From: Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions
Proposed database feature | Adult | Parent/guardian or carer | p value | |
|---|---|---|---|---|
To help educate and increase the knowledge of doctors and health care professionals | High | 346 (91.5%) | 94 (94.0%) | NS |
Low | 4 (1.1%) | 1 (1.0%) | NS | |
To help find better treatments | High | 343 (90.7%) | 96 (96.0%) | NS |
Low | NS | |||
To help provide better services and support for patients | High | 334 (88.4%) | 92 (92.0%) | NS |
Low | NS | |||
To allow researchers across the world access to my unidentified information (anonymised) for research approved by the Rare Bone Diseases European Reference Network, BOND | High | 302 (79.9%) | 88 (88.0%) | NS |
Low | NS | |||
To be able to share medical information about my disease with other medical staff in an emergency | High | 297 (78.6%) | 87 (87.0%) | NS |
Low | 16 (4.2%) | 6 (6.0%) | NS | |
To be able to describe how the disease affects me (e.g., pain and tiredness) | High | 295 (78.0%) | 79 (79.0%) | NS |
Low | 15 (4.0%) | 2 (2.0%) | NS | |
To help find ways to get an earlier diagnosis | High | 289 (76.5%) | 89 (89.0%) | p = 0.006 |
Low | 19 (5.0%) | 1 (1.0%) | NS | |
To be able to share medical information about my disease with my doctors | High | 278 (73.5%) | 82 (82.0%) | NS |
Low | 20 (5.3%) | 5 (5.0%) | NS | |
To be able to share my experience in getting correctly diagnosed | High | 256 (67.7%) | 79 (79.0%) | p = 0.03 |
Low | 29 (7.7%) | 3 (3.0%) | NS | |
To have the possibility to be contacted by other researchers that have expertise of my disease about new studies I may want to get involved with | High | 250 (66.1%) | 78 (78.0%) | p = 0.02 |
Low | 21 (5.6%) | 6 (6.0%) | NS | |
To be able to share the impact of the disease on studying and/or working | High | 244 (64.6%) | 71 (71.0%) | NS |
Low | 21 (5.6%) | 6 (6.0%) | NS | |
To allow drug companies across the world access to my unidentified information (anonymised) for research approved by the Rare Bone Diseases European Reference Network, BOND | High | 243 (64.3%) | 72 (72.0%) | NS |
Low | 27 (7.1%) | 8 (8.0%) | NS | |
To be able to share my daily life experiences | High | 233 (61.6%) | 70 (70.0%) | NS |
Low | 29 (7.7%) | 4 (4.0%) | NS | |
To find out how my information is used by researchers | High | 231 (61.1%) | 82 (82.0%) | p < 0.001 |
Low | 30 (10.1%) | 5 (5.0%) | NS | |
To have access to the names of health care professionals I see and have seen | High | 228 (60.3%) | 74 (74.0%) | p = 0.012 |
Low | 38 (10.1%) | 5 (5.0%) | NS | |
To be able to connect (with appropriate permissions) with other people with rare bone diseases | High | 195 (51.6%) | 62 (62.0%) | NS |
Low | 48 (12.7%) | 8 (8.0%) | NS | |
To have access to the lists of medicines I am on and medication allergies I have | High | 181 (47.9%) | 65 (65.0%) | p = 0.002 |
Low | 54 (14.3%) | 10 (10.0%) | NS | |
To be able to share that I have anxiety and self-confidence problems | High | 170 (45.%) | 52 (52.0%) | NS |
Low | 61 (16.1%) | 12 (12.0%) | NS | |
To be able to share my experience in making friends, socialising and having relationships | High | 151 (39.9%) | 55 (55.0%) | p = 0.007 |
Low | 69 (18.3%) | 8 (8.0%) | p = 0.01 |