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Table 4 Participants’ knowledge about the healthcare system for RD patients

From: Needs assessment study of rare diseases education for nurses and nursing students in Poland

Items Students
N(%)
Nurses
N(%)
p - value
What is the name of the European website providing information about RD and orphan drugs?    0
 Rare Disease Foundation 3 (2.7) 6 (3.9)  
 NORD 4 (3.5) 1 (0.7)  
 EURORDIS 11 (9.7) 29 (18.7)  
 R.A.R.E 5 (4.4) 5 (3.2)  
Orphanet 1 (0.9) 28 (18.1)  
 Global Genes 1 (0.9) 3 (1.9)  
 I do not know 88 (77.9) 83 (53.5)  
Is there a central register of RD patients in Poland?    0.31
 Yes 64 (56.6) 100 (64.5)  
No 10 (8.9) 8 (5.2)  
 I do not know 39 (34.5) 47 (30.3)  
What percentage of rare disease can be treated with drugs?    0.14
 0% 6 (5.3) 3 (1.9)  
5% 30 (26.5) 58 (37.4)  
 10% 22 (19.5) 23 (14.8)  
 15% 16 (14.2) 19 (12.3)  
 20% 11 (9.7) 11 (7.1)  
 50% 1 (0.9) 7 (4.5)  
 I do not know 27 (23.9) 34 (22)  
Are orphan drugs reimbursed in Poland?    0
 Yes 2 (1.8) 4 (2.6)  
Yes, some 50 (44.3) 83 (53.6)  
 No 15 (13.3) 46 (29.7)  
 I do not know 46 (40.7) 22 (14.2)  
Do RD constitute a serious public health issue?    0.0001
 Absolutely yes 29 (25.7) 83 (53.5)  
 Yes 67 (59.3) 61 (39.4)  
 No 6 (5.3) 6 (3.9)  
 Definitely not 1 (0.9) 0  
 I do not know 10 (8.8) 5 (3.2)