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 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 | – |
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)