Netherton Syndrome Study Survey

Thank you for your interest in this study of an investigational topical lotion for Netherton's. In order to determine if you pre-qualify for this research study, we will ask you a few questions about your skin and treatments you may have tried. You may stop answering at any time and do not need to answer any questions that make you feel uncomfortable. All information you provide will be kept conﬁdential and stored in the secured study database if you are enrolled in the study. If you will not qualify for the study, your information will also be kept in the secured database until the end of the study and then destroyed unless you elect to have us retain your information for potential future trials (see question 14 below).

Question Title

* 1. Please provide your contact information:

Name *

State/Province

ZIP/Postal Code

Email Address *

Phone Number *

Question Title

* 2. For the phone number you provided above please specify:

Cell

Home

Question Title

* 3. What is your age?

Question Title

* 4. If female, are you pregnant or breastfeeding?

Yes

Question Title

* 5. Do you have a clinical diagnosis of Netherton's Syndrome (NS)?

Yes

Question Title

* 6. At what age did you start to experience the ONSET of your skin disease/problems?
(NOTE: We are asking for when your skin problems began rather than the date your skin disease was diagnosed which is typically well after the ONSET of the condition.)

Since birth

Prior to 5 years of age

Prior to 10 years of age

Prior to 18 years of age

As an adult

Question Title

* 7. Have you ever had genetic testing to confirm your diagnosis?

Yes

Question Title

* 8. If you answered yes to question 7 above, did the genetic test show (check all that apply):

SPINK5 mutation

Not sure

Other (please specify)

Question Title

* 9. This study may require a genetic test to confirm your NS diagnosis. Are you willing to have this test?

Yes

Question Title

* 10. Do you currently have NS lesions on your arms or legs?

Yes

Question Title

* 11. Which of the following treatments have you used for NS? (please select any/all that apply):

Ultraviolet Therapy

Antibiotics

Systemic Retinoids

Systemic Steroids

Systemic Biologic Therapy

Keratolytics (moisturizers with urea, lactic acid, etc.)

Topical Prescription Treatment (steroids, retinoids, pimecrolimus, etc.)

Other (please specify)

Question Title

* 12. What treatments are you currently using for your NS? List all below.

Question Title

* 13. Are you currently enrolled in any other clinical research study?

Yes

Question Title

* 14. May we retain your information so we may contact you about potential future studies?

Yes

Question Title

* 15. How did you hear about this study?

Foundation for Ichthyosis & Related Skin Types (FIRST)

Facebook

Google

Refer a Friend Program. Please confirm first and last name of the person who referred you:

Thank you for your answers! If you pre-qualify, a team member will contact you soon.

Netherton Syndrome Study Survey

Question Title

* 1. Please provide your contact information:

Question Title

* 2. For the phone number you provided above please specify:

Question Title

* 3. What is your age?

Question Title

* 4. If female, are you pregnant or breastfeeding?

Question Title

* 5. Do you have a clinical diagnosis of Netherton's Syndrome (NS)?

Question Title

* 6. At what age did you start to experience the ONSET of your skin disease/problems?(NOTE: We are asking for when your skin problems began rather than the date your skin disease was diagnosed which is typically well after the ONSET of the condition.)

Question Title

* 7. Have you ever had genetic testing to confirm your diagnosis?

Question Title

* 8. If you answered yes to question 7 above, did the genetic test show (check all that apply):

Question Title

* 9. This study may require a genetic test to confirm your NS diagnosis. Are you willing to have this test?

Question Title

* 10. Do you currently have NS lesions on your arms or legs?

Question Title

* 11. Which of the following treatments have you used for NS? (please select any/all that apply):

Question Title

* 12. What treatments are you currently using for your NS? List all below.

Question Title

* 13. Are you currently enrolled in any other clinical research study?

Question Title

* 14. May we retain your information so we may contact you about potential future studies?

Question Title

* 15. How did you hear about this study?

* 6. At what age did you start to experience the ONSET of your skin disease/problems?
(NOTE: We are asking for when your skin problems began rather than the date your skin disease was diagnosed which is typically well after the ONSET of the condition.)