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Table 4 Development of PRO data submissions for rare diseases over time

From: Patient-reported data informing early benefit assessment of rare diseases in Germany: A systematic review

Items

2018

 

2017

 

2016

 

2015

 

2014

 

2013

 

2012

 

2011

 

Assessment processes

10

 

16

 

17

 

15

 

13

 

3

 

5

 

2

 

Clinical PROs

4

40%

12

75%

11

65%

6

40%

4

31%

0

0%

0

0%

0

0%

HRQoL

6

60%

13

81%

13

76%

11

73%

10

77%

2

67%

4

80%

2

100%

Preferences

1

10%

1

6%

0

0%

0

0%

0

0%

0

0%

0

0%

0

0%

Satisfaction

0

0%

0

0%

1

6%

0

0%

0

0%

0

0%

0

0%

0

0%