Preview of the questionnaire
Personal data
What is your NHS number?
Your NHS number is a 10 digit number, like 485 777 3456. It is on any letter you receive from the NHS. You can also obtain it on the NHS website (link opens in new window).
Please select the neuromuscular centre from which you receive your main care for BMD, from the list below.
Diagnosis
What is your genetically confirmed diagnosis?
This information will be found on any genetic report that you will have received.
Do you have a copy of your genetic report(s)?
If you consent, we will contact the clinic selected in the section “Personal data” directly to request a copy of your genetic report.
Motor function
Which of the following activities are you currently able to carry out?
Wheelchair use
Do you currently use a wheelchair or other mobility device (e.g. buggy/pushchair/walking frame or electric scooter)?
Corticosteroid usage
Have you ever taken oral corticosteroids (steroids)?
If you have ever taken oral steroids, please provide the following details.
If you are currently taking oral steroids, please provide the following details.
Heart and breathing function
Have you been diagnosed with cardiomyopathy (heart disease)?
Do you currently take any of the following medications?
If yes, when did you first start taking these medications?
Do you currently use mechanical ventilation equipment?
Medical history and measurements
Have you been diagnosed with any other disease or long term medical condition (other than BMD)?
Have you ever undergone any major surgery (e.g. pacemaker, heart transplant, spinal surgery)?
Is any major surgery planned in the next 12 months?
Have you taken any other prescribed medication(s) in the last 12 months?
Please only count those drugs you have taken for at least 14 days in a row.
Have you taken any non-prescribed medication(s) or supplement(s) in the last 12 months?
Please only count those drugs or supplements you have taken for at least 14 days in a row.
What is your current (within the last 6 months) height and weight?
Participation
Have you ever participated in a BMD-related clinical trial?
Please consider any interventional and natural history studies. Information about BMD-related research studies or clinical trials can be found on the BMD Hub website (link opens in new window).
If yes, which trial(s) are you participating in or have you participated in?
To add multiple trials, click on the button “Add another clinical trial”.
How important would the following criteria be for your decision to participate in an interventional study?
An interventional study is a research study performed on people that is aimed at evaluating a medical, surgical, or behavioral intervention.
Would you be willing to participate in an interventional study requiring the following tests?
How far would you be willing to travel to another site to participate in an interventional study?
This question refers to the distance from the address you specified during registration. You can view and edit it on the page Contact data (link opens in new window).
How important would the following criteria be for your decision to participate in a natural history study?
A natural history study collects health information over time to understand how the medical condition or disease develops and to give insight into how it might be treated.
In case you are not interested in participating in a natural history study, just leave the option “Not specified” selected.
Would you be willing to participate in an natural history study requiring the following tests?
How far would you be willing to travel to another site to participate in a natural history study?
Which kinds of trials would you like to be contacted about?
These are research studies performed on people that are aimed at evaluating a medical, surgical, or behavioral intervention.
A study collecting health information over time to understand how the medical condition or disease develops and to give insight into how it might be treated.