Please read the following document for more information about this study:
By clicking "I agree" below you are indicating that you have read and understood the consent form and agree to participate in this research survey. Please print a copy of this page for your records.
* must provide value
I agree
I do not agree
Have you been diagnosed with TSC, or are you the caregiver of someone who has been diagnosed with TSC?
* must provide value
I have been diagnosed with TSC
I am the caregiver of someone with TSC
How old are you?
* must provide value
Age 21 or older
Age 12 to 21
Age 6 to 11
Please continue filling out this survey with the help of a parent or caregiver.
Please consider asking a parent or caregiver to help you fill out the remainder of this survey.
To screen for duplicate responses, what are the first two letters of your first name, and the last two letters of your last name (e.g. John Smith would write "joth"):
To screen for duplicate responses, what are the first two letters of YOUR CHILD'S first name, and the last two letters of YOUR CHILD'S last name (e.g. parent/caregiver of John Smith would write "joth"):
Many patients with tuberous sclerosis have skin-colored or pink bumps on the face (cheeks, nose, chin, forehead). These bumps are known as angiofibromas. Have you ever had angiofibromas?
Yes
No
Have you ever received treatment for your angiofibromas?
Yes
No
Have you ever been seen by a dermatologist (skin doctor) for skin issues related to tuberous sclerosis?
Yes
No
What treatments have been recommended for your angiofibromas? Check all that apply.
You indicated that topical rapamycin/sirolimus was recommended for your angiofibromas. Were you prescribed this medication?
Yes
No
Who prescribed topical rapamycin/sirolimus for you?
Was topical rapamycin/sirolimus covered by your insurance?
* must provide value
Yes all of the time
Yes some of the time
No
Don't know
Were you able to obtain topical rapamycin/sirolimus?
Yes
No
Why weren't you able to obtain topical rapamycin/sirolimus?
How much were you told a month's supply of topical rapamycin/sirolimus would cost you in US dollars (If you can't remember, write "I don't know")?
How many months after being prescribed topical rapamycin/sirolimus did it take to receive this treatment?
How much did a month supply of topical rapamycin/sirolimus cost you in US $ (if you can't remember write "I don't know")?
Many patients with tuberous sclerosis have skin-colored or pink bumps on the face (cheeks, nose, chin, forehead). These bumps are known as angiofibromas. Has your child ever had angiofibromas?
Yes
No
Has your child been treated for his/her angiofibromas?
Yes
No
Has your child ever been seen by a dermatologist (skin doctor) for skin issues related to tuberous sclerosis?
Yes
No
What treatments have been recommended for your child's angiofibromas? Check all that apply.
You indicated that topical rapamycin/sirolimus was recommended for your child's angiofibromas. Was your child prescribed this medication?
Yes
No
Who prescribed this medication for your child?
Was topical rapamycin/sirolimus covered by your insurance?
Yes all of the time
Yes some of the time
No
Don't know
Were you able to obtain topical rapamycin/sirolimus?
Yes
No
Why weren't you able to obtain topical rapamycin/sirolimus?
How many months after being prescribed topical rapamycin/sirolimus did it take to receive this treatment?
How much did a one month supply of topical rapamycin/sirolimus cost you in US $ (if you can't remember, write "do not know")?
What is your birth MONTH and YEAR? (mm-yy)
* must provide value
Gender (check ONLY one with which you MOST CLOSELY identify):
Female
Male
Unknown
Other
Race (Check those with which you identify):
Is English your Primary Language?
Yes
No
Education Level (Select the highest level you have attained):
Never attended/Kindergarten only 1st Grade 2nd Grade 3rd Grade 4thGrade 5th Grade 6th Grade 7th Grade 8th Grade 9th Grade 10th Grade 11th Grade 12 Grade no diploma High School Graduate GED or Equivalent Some college, no degree Associate Degree: academic program Associate Degree: occupational program Bachelor's Degree (e.g. BA, BS, AB) Master's Degree (e.g. MA, MS, MEng) Professional school degree (e.g. MD, DDS, JD) Doctoral Degree (e.g. PhD, EdD) Unknown
What is your child's birth MONTH and YEAR (mm-yy):
Child's Gender (check ONLY one with which your child MOST CLOSELY identifies):
Female
Male
Unknown
Other
Child's Race (Check those with which your child identifies):