Skip to main content

Table 1 The report form for registry to Remudy

From: Characteristics of Japanese Duchenne and Becker muscular dystrophy patients in a novel Japanese national registry of muscular dystrophy (Remudy)

Contact

Clinical data

-Name

-Data

-ID number

-Muscle biopsy

-Hospital

  •Examed/not examed

-Date of birth

  •Dystrophin immunostain

-Address

-Walking capability

-Phone

  •Ambulant /wheelchair

-E-mail

-Use steroid therapy

-Signed up for other registries

-Cardiac function

-Attending any clinical trials

  •LVEF(%)

-Registering other database

  •Medication

Diagnosis

-Respiratory function

-DMD/BMD/IMD

  •FVC

-Proof of the diagnosis

  •Mechanical support

  •Genetic confirmed

-Scoliosis surgery

  •Muscle biopsy

-CK level

  •Suspected from family history

-Weight

  •Others

Molecular genetic data (certificated report should be attached)

 

-Method

 

  •MLPA/Multiplex PCR/southern blot/RT-PCR/ Direct sequencing of exons

 

-Type of mutation

 

  •Deletion/duplication/others

 

  •Details of the mutation

  1. DMD, Duchenne muscular dystrophy; BMD, Becker muscular dystrophy; IMD, Intermediate muscular dystrophy; MLPA, Multiplex ligation-dependent probe amplification; LVEF, Left ventricular ejection fraction; FVC, Forced vital capacity; CK, Creatine kinase.