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Table 4 Self-assessment and information access of rare diseases

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

Items N %
How well do you know about rare diseases?
 Well 1 0.19%
 Somewhat 7 1.30%
 Insufficiently 158 29.31%
 Minimally 373 69.20%
Was there any rare disease course in your medical education?
 Yes 84 15.58%
 No 404 74.95%
 I do not know 51 9.46%
How did you learn about rare diseases?  
 Studying in medical school 248 46.01%
 Browsing RD websites 118 21.89%
 Working in clinic 376 69.76%
 Advanced training in other hospitals 216 40.07%
 Attending academic conferences 342 63.45%
 Others 40 7.42%
 Never heard of them 20 3.71%
Which access was most effective for you?  
 Studying in medical school 29 5.38%
 Surfing RD website 38 7.05%
 Working in clinic 232 43.04%
 Advanced training in other hospital 103 19.11%
 Attending academic conferences 124 23.01%
 Others 13 2.41%
Which websites do you prefer to use to learn more about RDs?
 PubMed 128 23.75%
 Baidu 412 76.44%
 Wikipedia 79 14.66%
 Uptodate 103 19.11%
 Rare disease specialist website 20 3.71%
 DXY 329 61.04%
 CNKI or VIP or WangFang 114 21.15%
 I do not want to know about them 7 1.30%
 Others 22 4.08%
Which professional websites on RD have you used?  
 OMIM 71 13.17%
 National Rare Disease Registry System of China 255 47.31%
 Orphanet Portal for rare diseases 35 6.49%
 ERAM or PEDAM 62 11.50%
 Others 222 41.19%