Table 2 Emergency physicians’ knowledge of rare diseases
From: Poor education and urgent information need for emergency physicians about rare diseases in China
Items | n | % | |
|---|---|---|---|
Incidence of RD (in European Union criteria) | Â | ||
 < 1: 1000 | 66 | 12.24% | |
 < 1: 2000 [19] | 23 | 4.27% | |
 < 1: 10,000 | 259 | 48.05% | |
 I do not know | 191 | 35.44% | |
Number of RDs in the world | Â | Â | |
 600–800 | 93 | 17.25% | |
 6000–8000 [19] | 115 | 21.34% | |
 60,000–80,000 | 18 | 3.34% | |
 I do not know | 313 | 58.07% | |
Number of patients suffering from RD in China | |||
 200,000 | 101 | 18.74% | |
 2,000,000 | 112 | 20.78% | |
 20,000,000 [7] | 44 | 8.16% | |
 200,000,000 | 0 | 0% | |
 I do not know | 282 | 52.32% | |
Is there any national register system for RD in China? | |||
 Yes [7] | 199 | 36.92% | |
 No | 28 | 5.19% | |
 I do not know | 312 | 57.88% | |
The exact number of RDs in the first list of rare diseases in 2018 | |||
 121 [17] | 93 | 17.25% | |
 147 | 95 | 17.63% | |
 I do not know | 351 | 65.12% | |
The percent of RDs with orphan drugs | Â | ||
 0% | 11 | 2.04% | |
 5% [5] | 105 | 19.48% | |
 10% | 41 | 7.61% | |
 20% | 23 | 4.27% | |
 50% | 6 | 1.11% | |
 I do not know | 353 | 65.49% | |
Are all RDs hereditary? | Â | Â | |
 Yes | 30 | 5.57% | |
 No [13] | 509 | 94.43% | |
The percentage of hereditary diseases among RDs | Â | ||
 20% | 100 | 18.55% | |
 50% | 72 | 13.36% | |
 80% [13] | 97 | 18% | |
 100% | 2 | 0.37% | |
 I do not know | 268 | 49.72% | |
The most common age of onset of RD | Â | ||
 Neonatal period | 45 | 8.35% | |
 Childhood [30] | 147 | 27.27% | |
 Adulthood | 37 | 6.86% | |
 Equal in all age groups | 143 | 26.53% | |
 I do not know | 167 | 30.98% | |
Have you first diagnosed an RD in a patient? | Â | Â | |
 Yes | 140 | 25.97% | |
 No | 399 | 74.03% | |
How many RDs have you seen in your career? * | Â | ||
 1 ~ 5 | 54 | 38.57% | |
 5 ~ 10 | 44 | 31.43% | |
 10 ~ 15 | 22 | 15.71% | |
 15 ~ 20 | 10 | 7.14% | |
 > 20 | 10 | 7.14% | |