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Table 5 Emergency physicians’ needs for RD information

From: Poor education and urgent information need for emergency physicians about rare diseases in China

Items N %
Would you like to know more about rare diseases?
 Yes 497 92.21%
 No 4 0.74%
 I'm not sure 38 7.05%
The reasons delaying the diagnosis of rare disease
 Lack of practice guidelines or consensus 450 83.49%
 Do not know how to find relevant professional websites 271 50.28%
 Do not know a hospital or specialist that I can refer to 252 46.75%
 Lack of material or official account to disseminate to patients or their family 225 41.74%
 Do not know a hospital or specialist for genetic counselling 277 51.39%
Which aspect of rare diseases do you prefer to learn more about?
 Practice guidelines or consensus 466 86.46%
 Relevant professional websites 370 68.65%
 A hospital or specialist that I can refer to 308 57.14%
 Material or official account to disseminate to patients or their family 267 49.54%
 A hospital or specialist for genetic counselling 271 50.28%
Which specialty needs more in-depth training on rare diseases?
 Paediatrician 156 28.94%
 General practitioner 212 39.33%
 Neurologist 110 20.41%
 Geneticist 186 34.51%
 Physician 139 25.79%
 Emergency physician 254 47.12%
 Every physician regardless of specialization 276 51.21%
 Other 9 1.67%
 None 4 0.74%
Is it necessary to add a course on rare disease to your medical school education?
 Yes 475 88.13%
 No 32 5.94%
 Depends on the course content 32 5.94%