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?
This has been the case since the age of years and months.
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?
Count the number of pregnancies even if you did not have the baby.
Part 2 (to be completed by the doctor)
Have you been diagnosed with a heart condition?
This condition was diagnosed at the age of years and months.
Have you had an operation to implant a device to control/normalize your heart rhythm?
This operation was performed at the age of years and months.
Have you had an electrocardiogram (ECG)?
ms
ms
as year-month-day, e.g. 2010-01-27
Have you had an ultrasound examination of the heart (echocardiography)?
%
as year-month-day, e.g. 2010-01-27
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?
%
as year-month-day, e.g. 2010-01-27
Do you have a tube (gastric/nasal) for feeding?
Have you had eye surgery for cataract removal?
This operation was performed at the age of years and months.
At what age did the first medical problems occur that may be related to your myotonic dystrophy?
The first symptoms occured at the age of years and months.
What is your genetic test result?
as year-month-day, e.g. 2010-01-27
The base pair value is the triplet repeat length multiplied by three. Please report the modal (average) allele length defined as the middle or most intense region of the smear. If a range was provided please report the mean of the range quoted.
base pairs