Survey on design of clinical trials to improve bone health in DMD-Adolescent version

Poor bone health (weak bones) and fractures are very common in DMD. However, there is still very little information on how to treat weak bones in DMD. 

We would like to develop clinical trials to improve bone health in DMD. We would value your opinion to help us design such a research study. We would be very grateful if you could fill in this survey which consists of 15 questions and should only take you approximately 15 minutes.

Thank you very much for taking the time to complete this survey.

Dr Shuko Joseph (Clinical Research Fellow in DMD, Glasgow)
Ms Marina DiMarco (Principal Neuromuscular Physiotherapist, Glasgow)
Ms Jen Dunne (Neuromuscular Nurse Specialist, Glasgow)
Dr Iain Horrocks (Consultant Paediatric Neurologist, Glasgow)
Dr Jarod Wong (Senior Clinical Lecturer Paediatric Endocrinology, Glasgow)

Question Title

* 1. Are you an adolescent with DMD aged 14 years and older?
[Please only tick one answer]

Question Title

* 2. How old are you?

Question Title

* 3. Have you ever had a fracture? (This could be a broken bone or collapse/compression of the back bone)
[Please only tick one answer]

Question Title

* 4. Have you ever been treated with bone strengthening medicines? (Bisphosphonate medicines or also known as Pamidronate, Zoledronate, Risedronate, Alendronate)?
[Please only tick one answer]

Question Title

* 5. How concerned are you about your bone health?
[Please only tick one answer]

Question Title

* 6. Do you think it is important for doctors to find better ways to improve your bone health?
[Please only tick one answer]

Question Title

* 7. What do you think is the most important aim in a clinical trial to improve bone health in DMD?
[Please only tick one answer]

Question Title

* 8. Do you think the opportunity of strengthening your bones is worth 6 monthly infusions via a drip into the veins?
[Please only tick one answer]

Question Title

* 9. Do you think the opportunity of strengthening your bones is worth 3 monthly injections under the skin?
[Please only tick one answer]

Question Title

* 10. In a randomised clinical trial, you are not able to choose which treatment you would receive. Participants are put into groups by chance.
Would you be happy with this?
[Please only tick one answer]

Question Title

* 11. In a randomised clinical trial, one group will be allocated to receive the new treatment and the other group will receive no treatment or the usual treatment (control group).
Would you be happy with this?
[Please only tick one answer]

Question Title

* 12. In a randomised placebo clinical trial, one group will be allocated to receive the new treatment and the other group will receive placebo (which is a liquid which looks exactly like the active medicine but does not contain the active medicine).

Would you be happy if you were selected to be in the group which will receive the placebo and if this is to be given as an infusion via a drip into the veins?
[Please only tick one answer]

Question Title

* 13. In a randomised placebo clinical trial, one group will be allocated to receive the new treatment and the other group will receive placebo (which is a liquid which looks exactly like the active medicine but does not contain the active medicine).

Would you be happy if you were selected to be in the group which will receive the placebo and if this is to be given as injections under the skin?
[Please only tick one answer]

Question Title

* 14. If the randomised clinical trial was happening now, would you be willing to join?
[Please only tick one answer]

Question Title

* 15. Did your parent/guardian help you to answer this survey?
[Please only tick one answer]

T