Questionnaire

Here you can find a preview of the questions you and your doctor will be asked if you sign up. When filling in the real questionnaire online, you can click on the answers and enter your details in text boxes.

Part 1 (to be completed by the patient)

What is your diagnosis, according to your doctor?

Has anybody else in your family been diagnosed with the same disease?

Have you signed up for any other myotonic dystrophy registry?

How would you describe your ethnic origin?

Which of the following options describes the best motor function you are currently able to achieve?

Do you use a wheelchair?

Does myotonia (cramping, difficulties releasing your grip, etc.) currently have a negative effect on your normal daily activities?

Do you currently take medication to treat or prevent myotonia?

Do you have difficulty swallowing (food gets stuck in your throat, choking, etc)?

Does fatigue or daytime sleepiness currently have a negative effect on your normal daily activities?

Do you currently take any medication to treat or prevent fatigue or daytime sleepiness?

Have you ever been pregnant?

 

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Part 2 (to be completed by the doctor)

Have you been diagnosed with a heart condition?

Have you had an operation to implant a device to control/normalize your heart rhythm?

Have you had an electrocardiogram (ECG)?

Have you had an ultrasound examination of the heart (echocardiography)?

Do you currently take any medication to treat or protect your heart (e.g. ACE inhibitors, beta blockers, or anti‐arrhythmics)?

Do you regularly use a non‐invasive ventilation device?

Do you regularly use an invasive ventilation device?

Have you had pulmonary function testing?

Do you have a tube (gastric/nasal) for feeding?

Have you had eye surgery for cataract removal?

At what age did the first medical problems occur that may be related to your myotonic dystrophy?