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Table 2 Participants’ knowledge about rare diseases

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

Items Students
N(%)
Nurses
N(%)
p - value
Have you ever heard the term ‘rare diseases’?    0.35
 Yes 107 (94.7) 141 (91)  
 No 6 (5.3) 14 (9)  
Rare disease is one that affects less than:    0.004
 1 person in 1000 17 (15) 19 (12.2)  
1 person in 2000 8 (7.1) 18 (11.6)  
 1 person in 3000 1 (0.9) 6 (3.9)  
 1 person in 5000 5 (4.4) 17 (11)  
 1 person in 10,000 52 (46) 78 (50.3)  
 I do not know 30 (26.6) 17 (11)  
What is the estimated number of rare diseases?    0.004
 100–500 17 (15) 23 (14.8)  
 1000-2000 37 (32.7) 22 (14.2)  
 3000-5000 14 (12.4) 18 (11.6)  
6000-8000 7 (6.2) 19 (12.3)  
 9000-10,000 6 (5.3) 7 (4.5)  
 Over 10,000 9 (8) 29 (18.7)  
 I do not know 23 (20.4) 37 (23.9)  
In what age group do rare diseases most frequently appear?    0.07
 Newborns 29 (25.7) 20 (12.9)  
Children 42 (37.2) 77 (49.7)  
 Adolescents 3 (2.6) 4 (2.6)  
 Adults 6 (5.3) 14 (9)  
 They are present in all age groups equally 21 (18.6) 29 (18.7)  
 I do not know 12 (10.6) 11 (7.1)  
How many people suffer from rare diseases worldwide?    0.004
 10–15,000,000 23 (20.3) 33 (21.3)  
 50–75,000,000 35 (31) 20 (12.9)  
 100–150,000,000 15 (13.3) 19 (12.3)  
 200–250,000,000 5 (4.4) 9 (5.8)  
300–350,000,000 7 (6.2) 27 (17.4)  
 Over 500,000,000 1 (0.9) 4 (2.6)  
 I do not know 27 (23.9) 43 (27.7)  
How many people suffer from rare diseases in Poland?    0.78
 500–1000 22 (19.5) 27 (17.4)  
 10–15,000 28 (24.8) 34 (22)  
 50–75,000 17 (15.1) 15 (9.7)  
 100–150,000 11 (9.7) 17 (11)  
 300–500,000 5 (4.4) 3 (1.9)  
 1000,000 2 (1.8) 5 (3.2)  
2–3000,000 4 (3.5) 13 (8.4)  
 Over 5000,000 0 3 (1.9)  
 I do not know 24 (21.2) 38 (24.5)  
What is the most common cause of rare diseases?    0.62
 Infectious and bacterial 5 (4.4) 3 (1.9)  
Genetic 67 (59.3) 104 (67.1)  
 Autoimmune 26 (23) 35 (22.6)  
 Mitochondrial 3 (2.7) 3 (1.9)  
 Environmental 1 (0.9) 1 (0.7)  
 I do not know 11 (9.7) 9 (5.8)  
What percentage of rare diseases are of genetic origin?    0.78
 5–10% 19 (16.8) 32 (20.7)  
 20% 27 (23.9) 35 (22.6)  
 50% 28 (24.8) 36 (23.2)  
80% 30 (26.5) 36 (23.2)  
 100% 0 2 (1.3)  
 I do not know 9 (8) 14 (9)  
  1. Correct answers are written in boldface