The Cystinosis Patient Survey

The Cystinosis Patient Survey is designed to help us and our partner companies learn more about important areas affecting our community, including your experience with cystinosis, use of cysteamine eye drops and the type of resources and support most meaningful to people touched by this disease.

By completing this brief questionnaire, you are helping make a difference for the cystinosis patient community. All of your personal and contact information will remain confidential.

Please complete a separate survey for each patient with cystinosis. For example, if you have two children with cystinosis, please complete two surveys.

Thank you in advance for your support. If you have any questions, please contact Kelly Butterworth at 202.591.4052 or kelly@jonespa.com.

Question Title

1. Please share the following personal information. Please note that your personal information will not be shared beyond the Cystinosis Research Network and its support staff.

Your First Name

Your Last Name

Patient's First Name

Patient's Last Name

Patient's Date of Birth

Phone

Address

City

State

Zip

Question Title

2. Please share the following personal information. Please note that your personal information will not be shared beyond the Cystinosis Research Network and its support staff.

Name of cystinosis treating physician(s) (Can enter more than one doctor)

Optional: Please share the names of other family members. (Indicate relationship to patient, i.e., sister, brother, mother, father)

Question Title

3. What is your relationship to the cystinosis patient? Please select only one.

Self/patient

Mother

Father

Other guardian

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