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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)