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Survey for patients & caregivers about FSHD registries
The Basics
1.
Which of the following would you consider to be a disease registry?
A list of patients, with names and contact information (e.g. address) ONLY.
A list of patients, with names, contact information, age and demographic information, and health/disease status.
A list of patients, with names, contact information, age and demographic information, health/disease status, and updates of disease progression.
I am not sure.
2.
In your opinion, why would someone participate in a registry? Check all that apply.
To keep up to date about new treatments or care options.
To obtain information that will help delay the progression of the disease.
To improve understanding of the disease and treatment.
Other (please specify)
3.
Have you ever participated in an FSHD registry?
Yes
No
Not sure
