Items | Medicals | Nursings | Others | P-value |
---|---|---|---|---|
N (%) | ||||
1. Have you ever heard the term 'rare diseases'? | ||||
 Yes | 2636 (96.5) | 2252 (96.3) | 1701 (96.2) | 0.884 |
 No | 96 (3.5) | 86 (3.7) | 67 (3.8) | |
2. Rare disease is the one that affects less than: | ||||
 1 person in 1000 | 320 (11.7) | 276 (11.8) | 224 (12.7) | 0.979 |
 1 person in 2000 | 107 (3.9) | 89 (3.8) | 68 (3.8) | |
 1 person in 3000 | 91 (3.3) | 73 (3.1) | 55 (3.1) | |
 1 person in 5000 | 135 (4.9) | 116 (5) | 76 (4.3) | |
 1 person in 10,000 | 853 (31.2) | 770 (32.9) | 577 (32.6) | |
 I do not know | 1226 (44.9) | 1014 (43.4) | 768 (43.4) | |
3. What is the estimated number of rare diseases? | ||||
 100–500 | 196 (7.2) | 187 (8) | 129 (7.3) | 0.082 |
 1000–2000 | 282 (10.3) | 237 (10.1) | 160 (9) | |
 3000–5000 | 209 (7.7) | 128 (5.5) | 100 (5.7) | |
 6000–8000 | 211 (7.7) | 203 (8.7) | 170 (9.6) | |
 9000–1000 | 65 (2.4) | 78 (3.3) | 53 (3) | |
 Over 10,000 | 168 (6.1) | 140 (6) | 80 (4.5) | |
 I do not know | 1601 (58.6) | 1365 (58.4) | 1076 (60.9) | |
4. At what age group do rare diseases most frequently appear? | ||||
 Newborns | 680 (24.9) | 640 (27.4) | 467 (26.4) | 0.095 |
 Children | 663 (24.3) | 581 (24.9) | 390 (22.1) | |
 Adolescents | 83 (3) | 59 (2.5) | 58 (3.3) | |
 Adults | 135 (4.9) | 101 (4.3) | 76 (4.3) | |
 They are present in all age groups equally | 404 (14.8) | 324 (13.9) | 273 (15.4) | |
 I do not know | 767 (28.1) | 633 (27.1) | 504 (28.5) | |
5. How many people suffer from rare diseases worldwide? | ||||
 10–15,000,000 | 142 (5.2) | 145 (6.2) | 103 (5.8) | 0.592 |
 50–75,000,000 | 213 (7.8) | 143 (6.1) | 121 (6.8) | |
 100–150,000,000 | 193 (7.1) | 181 (7.7) | 122 (6.9) | |
 200–250,000,000 | 126 (4.6) | 128 (5.5) | 90 (5.1) | |
 300–350,000,000 | 172 (6.3) | 149 (6.4) | 100 (5.7) | |
 Over 500,000,000 | 74 (2.7) | 60 (2.6) | 44 (2.5) | |
 I do not know | 1812 (66.3) | 1532 (65.5) | 1188 (67.2) | |
6. How many people in the Asia suffer from rare diseases? | ||||
 10–50,000,000 | 259 (9.5) | 260 (11.1) | 167 (9.4) | 0.336 |
 50–100,000,000 | 197 (7.2) | 171 (7.3) | 113 (6.4) | |
 100–200,000,000 | 138 (5.1) | 106 (4.5) | 84 (4.8) | |
 200–250,000,000 | 74 (2.7) | 49 (2.1) | 40 (2.3) | |
 250–300,000,000 | 112 (4.1) | 95 (4.1) | 57 (3.3) | |
 I do not know | 1952 (71.4) | 1657 (70.9) | 1307 (73.9) | |
7. How many people suffer from rare diseases in Iran? | ||||
 10–50,000 | 258 (9.4) | 250 (10.7) | 167 (9.4) | 0.507 |
 100–300,000 | 253 (9.3) | 219 (9.4) | 153 (8.7) | |
 300–500,000 | 201 (7.4) | 154 (6.6) | 114 (6.4) | |
 1–1,500,000 | 213 (7.8) | 194 (8.3) | 128 (7.2) | |
 Over 2,000,000 | 96 (3.5) | 95 (4.1) | 72 (4.1) | |
 I do not know | 1711 (62.6) | 1426 (61) | 1134 (64.1) | |
8. What is the most common cause of rare diseases? | ||||
 Infectious and bacterial | 91 (3.3) | 49 (2.1) | 49 (2.8) | 0.421 |
 Genetic | 1911 (69.9) | 1674 (71.6) | 1244 (70.4) | |
 Autoimmune | 233 (8.5) | 245 (10.5) | 176 (10) | |
 Mitochondrial | 39 (1.4) | 27 (1.2) | 23 (1.3) | |
 Environmental | 50 (1.8) | 42 (1.8) | 30 (1.7) | |
 I do not know | 408 (14.9) | 301 (12.9) | 246 (13.9) | |
9. What percentage of rare diseases are of genetic origin? | ||||
 5–10% | 270 (9.9) | 227 (9.7) | 180 (10.2) | 0.911 |
 20% | 285 (10.4) | 235 (10.1) | 177 (10) | |
 50% | 363 (13.3) | 323 (13.8) | 220 (12.4) | |
 80% | 676 (24.7) | 585 (25) | 432 (24.4) | |
 100% | 0 (0) | 0 (0) | 0 (0) | |
 I do not know | 1138 (41.7) | 968 (41.4) | 759 (42.9) |