Tasigna (nilotinib) and clinical trials

[pspa-helpline]

Rigorous clinical trials are essential in order to reliably establish both the safety and efficacy of new drugs for the treatment of a particular condition.

These trials involve large numbers of people, who are closely monitored at regular intervals through standardised tests and examinations undertaken by specially trained professionals. The participants must meet strict criteria in order to take part to ensure that the trial is safe and that the results are reliable and give an accurate picture of the drug’s effects. The control (placebo) group undergo exactly the same procedures, and neither the researchers nor the participants know who is in this group. This prevents bias in reporting.

Participants in genuine trials will never be asked to pay for the trial treatment. Trials should be registered with the website clinicaltrials.gov and the results of properly conducted trials will be reported in peer-reviewed medical journals so that the medical community can fully understand the risks and benefits.

The drug Tasigna (generic name nilotinib) is licensed for the treatment of leukaemia (blood cancer). Some cancer patients taking Tasigna have experienced extremely serious side effects and anyone taking it should be carefully monitored.

A very small, early phase clinical trial of Tasigna in people with Parkinson’s disease suggested that it might be safe and beneficial for the treatment of Parkinson’s. However, further testing is needed to confirm this and the drug is now being trialled in a larger number of Parkinson’s patients in the USA, primarily to check its safety and tolerability with longer term use, but also to see if it gives any indication of benefit.

PSP and CBD do not have the same underlying disease mechanisms as Parkinson’s disease. Drugs that are helpful in Parkinson’s often have no effect in PSP and CBD. Tasigna has not been tested in PSP or CBD patients in a clinical trial.

Always talk to your GP, neurologist or specialist nurse if you are thinking of trying an alternative treatment. You may also like to read the publication “I’ve got nothing to lose by trying it”, from the organisation Sense About Science: senseaboutscience.org/activ...

Be aware that drugs purchased via the internet may be falsified medicines. More information is available from the European Medicines Agency: ema.europa.eu/en/human-regu...

PSP Association Helpline: 0300 0110 122; [e-mail]

[LuisRodicioRodicio]

Excelente y precisa información.

Gracias.

Abrazos

Luis

[Richard33]

We would all love there to be a miracle cure (or at least something to slow things down). But no UK doctor is going to prescribe Nilotinib. So one would end up buying this very expensive drug from abroad on the internet - with all the attendant risks. Who knows in 5 years it may prove that the drug does work for PSP. But I guess now is not the time to go plunging in and get distracted from the reality of what we have to face day to day.

[daddyt]

Exactly.

Tim