We know that many people with rare diseases need to take medicines that are not exactly designed for them because there are no approved medicines for their disease, or there is no approved medicine for their age group (in the case of paediatrics), or the formulation or administration needs to be changed or the dosage needs to be adjusted.
Up to 80% of medicines you take may not have been studied for people like you! Doctors need to "guesstimate" what they can do for you. A totally legal process on an individual level but that can lead to insufficient data gathering for other people who might need the same drug.
If you have used a drug in this way (not according to published indications), was the process OK? Did you wish there was more information available? What would make the experience better?
Did you know your doctor has the responsibility to report any side effects and results, in order to help other patients who use the drug in the same way.
Please fill out the survey and pass it on to others who have taken prescription drugs. We ask you to do so by mid-January.
https://www.surveymonkey.com/s/off_label_English
For more information, you can view the video on Off-label Use
https://eurordis.adobeconnect.com/_a830956913/p1437zpq7h0/?launcher=false&fcsContent=true&pbMode=normal
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