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Table 1 Structure of the Case Report Form and registry items

From: Nationwide patient registry for GNE myopathy in Japan

Basic information

Date

Hospital

ID of hospital

Name

Date of birth

Sex

Address

Phone

E-mail

Nationality

Signed up for other registries?

Attending any clinical trials?

Family history

Family history

Consanguinity

Diagnosis

Muscle biopsy

Genetic analysis* facility ( )

Complications

Patient status

Body weight and height

Age and symptoms at onset

Walking capability and wheelchair use

Grip power

Respiratory function (VC,%VC, FVC,%FVC, mechanical support)

Cardiac functions (EF, ES)

Creatine kinase level