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Table 1 List of questionnaires in RUDY JAPAN

From: The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project

No.

Disease

Name of questionnaire

No. of questions

Type

Ref.

1

Skeletal muscle channelopathies

Severity of periodic paralysisa

2

Not validated

 

2

 

Severity of myotonia

5

Not validated

[22]

3

 

EuroQoL (EQ5D)

6

Validated

[23, 24]

4

 

Epworth Sleepiness Scale (EPWORTH)

8

Validated

[25, 26]

5

 

Barthel index (BARTHEL)

10

Validated

[27]

6

 

36-Item Short Form Health Survey (SF36v2)

36

Validated

[28, 29]

7

 

Individualized Neuromuscular Quality of Life (INQOL)

61

Validated

[30, 31]

8

Hereditary angioedema (HAE)

Angioedema Quality of Life Questionnaire (AE-QoL)

17

Validated

[32]

9

 

HAE attack record

21

Newly developed

  1. aThis questionnaire was developed by a Japanese research group, Research on Rare and Intractable Neuromuscular Diseases, supported by the Ministry of Health, Labour and Welfare, Japan (https://www.nanbyou.or.jp/entry/4529)