Do You Take a Drug for an Off-Label Use? (Survey)

NORD [The National Organization for Rare Disorders] is one of several organizations collecting information about off-label use of drugs to help us better understand this issue. If you are currently taking a drug for a use not specified on its label, please consider taking a few minutes to send your answers to the following questions to:

Diane Dorman in NORD's Washington DC Office
E-mail: ddorman@rarediseases.org or
1050 17th Street, NW, Suite 600
Washington, DC 20036

Questions:

1. What is your state of residence?

2. What is your diagnosis?

3. How does this condition affect you?

4. What is the name of the medication that was prescribed for you? Has your doctor or pharmacist told you that use of the drug for your condition is off-label (eg, not approved by the FDA for treatment of your disease)?

5. How does it help you?

6. What happens when you can't take this medication?

7. What, if any, other treatments have you tried?

8. Were those treatments effective? Did you have any serious side effects?

9. If you have health insurance, has your insurance paid for this drug? If not, did they tell you why?

10. Would you be willing to be contacted by someone from NORD to discuss this further? (If so, please provide an e-mail address and/or phone number.)

Source: Orphan Disease Update. Winter 2007/2008. Volume XXVI, Edition 1, p. 8.

Added February 11, 2008