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Off-label use of medicines - information needed from people with ataxia

8 December 2011

What is off-label medication?
If your doctor is prescribing you or your child a medication that is not licensed for that particular condition and is given ‘off label’, you can help by taking part in the EURORDIS survey. (An example of this would be anyone with Friedreich’s ataxia being prescribed idebenone by their doctor.)

What is the survey for?
EURORDIS is a non-governmental alliance of individuals and patient organisations involved in improving the quality of life of people living with rare diseases in Europe.

The survey will help EURORDIS learn more about off-label use of medicines in people with rare conditions. This will help them advocate for easier access to these drugs. (An increasing number of European member states want to limit off-label use of medicines; EURORDIS is campaigning for the continued reimbursement of the costs of these drugs.)

Completing the survey

  • The survey can be completed online
  • You are welcome to complete the questionnaire in conjunction with your doctor, but please note that your personal input is particularly important.
  • If you have any doubts about any of the words used, please refer to the glossary
  • If multiple drugs have been used off-label, all the drugs taken can be listed in question four, but from question five please focus on one drug only. You are welcome to repeat the questionnaire for the other drugs, but this is not necessary.
  • The survey is estimated to take approximately 25 minutes to complete.
  • Please complete the survey by 15 January 2012.

Any more questions?
If you have any further questions please email Francois Houyez: francois.houyez@eurordis.org.

Thank you for your time.

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