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FSHD Survey

Thank you for participating in this survey. You are helping researchers better understand the impact of FSHD on patients and caregivers. These responses will be used to help advance the field and inform the design of clinical studies for new therapies. This survey is completely anonymous an no personally identifying or contact information will be disclosed through your participation in this survey.

1. What is your association with FSHD? (check all that apply)

Patient with FSHD
Caregiver/Friend of a Patient with FSHD
Other Please enter an 'other' value for this selection.

2. Have you attended FSH Society patient meetings or conferences, or would you like to?

Yes, at the local level
Yes, at regional FSHD centers
Yes, at the national level
Yes, at the international level

Questions 3-4 are for caregivers only

3. If you are a caregiver, what is your relationship to the patient with FSHD? (select one)

Please enter an 'other' value for this selection.

4. If you are a caregiver, how many hours per week on average do you provide care to your patient with FSHD?

Questions 5-39 are for both patients with FSHD and caregivers of patients with FSHD. If you are a caregiver, please answer the remaining questions on behalf of the patient that you care for and how you think they would respond.

5. When you think of FSHD, what is the one word that comes to mind?

6. A clinical trial is an experiment to test new investigational or potential treatments on patients to know if it is safe and effective. What would motivate you to volunteer for a clinical trial? (choose all that apply)

The chance to be first in line to try a treatment
The idea of advancing science
Even if it might not help me, it will help others some day
The feeling that I’m doing everything I can do to help
I’ll only try something that’s proven, so I wouldn’t volunteer
I’m not seeking a drug to treat FSHD, so I wouldn’t volunteer
Other Please enter an 'other' value for this selection.

7. Have you ever participated in a clinical study? (check all that apply)

Observational study (such as a patient registry or natural history study; no experimental therapy)
Investigational drug
Investigational device
Other Please enter an 'other' value for this selection.
None of the above

8. What kind of clinical study(s) in the future would you be interested in participating in? (check all that apply)

Observational study (such as a patient registry or natural history study; no experimental therapy)
Investigational drug
Investigational device
Other Please enter an 'other' value for this selection.
None of the above

9. What kind of clinical study(s) would you not be interested in participating in? (check all that apply)

Involves taking blood samples
Involves taking tissue samples
Involves lying inside an imaging machine for long periods of time
Other Please enter an 'other' value for this selection.

10. For a clinical study, you would need to come in on a periodic basis for visits to a clinic. What is the highest frequency you would be willing and able to come in to the clinic for study visits?

11. How much time would you be willing to spend traveling to/from a clinical trial site for your regular study visits?

12. What is the maximum amount of time you would be willing to commit to a single study visit (not including travel), assuming most of the other visits would be shorter?

13. What time window during the day for your clinical study visits would make it more likely that you would be willing and able to participate? (select all that apply)

Weekdays from 8am-5pm
Evenings
Weekends
Other Please enter an 'other' value for this selection.
I am flexible and will make time in my schedule

14. If you were to participate in a 6-month clinical study, what would you be willing to do at home as part of the study? (check all that apply)

Fill out a daily electronic diary/questionnaire
Wear one or more devices to monitor activity (e.g. ankle sensor, arm band)
Maintain a specified exercise regimen
Other Please enter an 'other' value for this selection.
I would not be willing to do anything at home

15. Do you exercise to try to mitigate the effects of FSHD?

16. What type of physical exercise, if any, do you engage in? (check all that apply)

Aerobic (e.g. walking, rowing, cycling, aquatic therapy)
Resistance training (with weights)
Other Please enter an 'other' value for this selection.
None of the above

17. What is your average level of exercise per day?

18. Which muscle weakness manifestations do you experience due to FSHD? (check all that apply)

19. Do you have foot drop (weak ankle dorsiflexion) due to FSHD?

20. How many times on average do you nearly fall (e.g. trip, stumble, but not to the ground) per month?

21. How many times on average do you fall (i.e. to the ground) per month?

22. What are the primary factors that contribute to your risk of falls? (check all that apply)

Ankle weakness / foot drop
Weakness in other muscles such as abdomen, back, pelvis/hip or upper leg
Foot numbness / loss of sensation
Loss of balance or coordination
Other Please enter an 'other' value for this selection.
None of the above

23. What challenges do you experience due to ankle weakness / foot drop? (check all that apply)

Walking long distances
Climbing up and down stairs
Maintaining balance
Getting up from a chair or the ground
Standing for long periods
Trips and falls
Other Please enter an 'other' value for this selection.
None, I do not have ankle weakness / foot drop

24. What is the most challenging aspect of ankle weakness / foot drop? (select one)

Please enter an 'other' value for this selection.

25. What devices do you use to help you get around? (check all that apply)

26. Do you have weak biceps (upper arms) due to FSHD?

27. What challenges do you experience due to biceps/upper arm weakness? (check all that apply)

Lifting objects (e.g. lifting a bag of groceries to waist level)
Personal care (e.g. brushing teeth, brushing hair, washing face, etc.)
Carrying objects (e.g. small suitcase or bag)
Dressing (e.g. putting on clothes, doing up buttons, etc.)
Manual activities (e.g. driving, vacuuming, sweeping, opening doors, etc.)
Transfer from sitting to standing (e.g. getting out of car, bathtub, chair, etc.)
Other Please enter an 'other' value for this selection.
None, I do not have biceps weakness

28. What is the most challenging aspect of biceps / upper arm weakness?

Please enter an 'other' value for this selection.

29. Do you use any type of bracing for your biceps (upper arms)? (select one)

Please enter an 'other' value for this selection.

30. Have you considered scapular fixation surgery?

31. How do the following affect your quality of life?

Loss of facial expression
Speech impairment
Arm/shoulder weakness
Foot/leg weakness
Core/abdominal weakness
Fatigue
Pain
Breathing issues
Hearing loss
People's lack of understanding
Having to keep my FSHD secret

32. Is there anything else related to your FSHD that affects your quality of life?

33. Which types of medical specialists do you see for your FSHD, and how often?

	Neurologist or neuromuscular specialist
	Orthotist
	Physical or occupational therapist
	Pulmonologist
	Eye specialist
	Hearing specialist
	Nutritionist

34. Do you see any other medical specialists for your FSHD, and how often?

35. Have you been genetically tested for FSHD?

37. At what age did you first exhibit signs of FSHD (as recalled by you or others)?

38. At what age did you first see a physician for your symptoms?

39. At what age were you formally diagnosed with FSHD by a doctor?

40. What is your age now?

42. What city and state do you live in?

Final results of the survey will be distributed by the FSH Society once all responses have been collected and analyzed. Please select submit if you are ready to finish this survey.

Thank you!