Netherton Syndrome Study Survey

Thank you for your interest in this study of an investigational topical lotion for Netherton Syndrome. In order to determine if you and/or your child pre-qualify for this research study, we will ask you a few questions about you and/or your child’s skin and treatments you and/or your child 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 and/or your child are enrolled in the study. For participants 17 years of age and under, parental/legal guardian consent is required. The parent or guardian is required to sign the Informed Consent, and the underage participant will need to sign the Assent. If you and/or your child do 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 15 below).

1.Please verify the following:

I am an adult (aged +18) with Netherton's Syndrome (NS)

I am the parent and/or legal guardian of a child (aged 4-17) with Netherton's Syndrome (NS)

I am a teenager (aged 13-17) with Netherton's Syndrome (NS)

2.Please provide thew following contact information:(Required.)

Your Full Name (Person filling out this survey)

Full Name of Patient with Netherton's Syndrome (If different from above)

State/Province

ZIP/Postal Code

Email Address

Phone Number

3.For the phone number you provided above please specify:

Cell

Home

4.Confirm age of Netherton's Syndrome Patient:

5.If female, are you and/or your child pregnant or breastfeeding?

Yes

6.Do you and/or your child have a clinical diagnosis of Netherton's Syndrome (NS)?

Yes

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

8.Have you and/ or your child ever had genetic testing to confirm you and/ or your child's diagnosis?

Yes

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

SPINK5 mutation

Not sure

Other (please specify)

10.This study may require a genetic test to confirm your and/ or your child's NS diagnosis. Are you and/ or your child willing to have this test?

Yes

11.11. Do you and/or your child currently have NS lesions on your and/or your child’s body excluding scalp?

Yes

12.Which of the following treatments have you and/ or your child ever 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)

13.What treatments are you and/ or your child currently using for your NS? List all below.

14.Are you and/ or your child currently enrolled in any other clinical research study?

Yes

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

Yes

16.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.