Hello all
Myeloma UK is collecting patient experiences of receiving panobinostat. Panobinostat belongs to a group of drugs called histone deacetylase (HDAC) inhibitors, which work in a completely different way to other drugs used in myeloma.
As panobinostat has recently been granted a licence by the United States Food and Drug Administration (FDA) andwill shortly be going through the European licensing process conducted by the European Medicines Agency (EMA), we want to hear from myeloma patients who have already received panobinostat about their experience.
We want to collect as much information as possible to allow us to fully reflect the perspective of patients when asked to give evidence about the drug in both the licensing process and when it goes through the UK health technology appraisal (HTA) bodies such as the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC).
As panobinostat has not yet received a licence in the EU or approval for use on the NHS, patients who have received panobinostat will have received it through a clinical trial.
If you have received panobinostat, we are very interested to hear from you and would appreciate it if you would take 10 minutes to complete this survey. Alternatively, if it is easier to speak to someone directly, please email kate.morgan@myeloma.org.uk or call 0131 557 3332 – our Senior Policy Officer Kate Morgan will be happy to chat through the questions with you.
We look forward to hearing from you.
Best wishes
Sarah
sarahstewart 9 years, 9 months ago.