Survey for patients & caregivers about FSHD registries

The Basics

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.

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)

Yes

Not sure