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? | Â | Â | 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) | Â |
 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? | Â | Â | 0.31 |
 Yes | 64 (56.6) | 100 (64.5) |  |
No | 10 (8.9) | 8 (5.2) | Â |
 I do not know | 39 (34.5) | 47 (30.3) |  |
What percentage of rare disease can be treated with drugs? | Â | Â | 0.14 |
 0% | 6 (5.3) | 3 (1.9) |  |
5% | 30 (26.5) | 58 (37.4) | Â |
 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? | Â | Â | 0 |
 Yes | 2 (1.8) | 4 (2.6) |  |
Yes, some | 50 (44.3) | 83 (53.6) | Â |
 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? | Â | Â | 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) |  |