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

Table 1 List of questionnaires in RUDY JAPAN

No.	Disease	Name of questionnaire	No. of questions	Type	Ref.
1	Skeletal muscle channelopathies	Severity of periodic paralysis^a	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	–

^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)

ISSN: 2056-7529