Update on the Alpha-interferon trial (Oct 2007)
Many thanks to those of you who have volunteered for the trial to answer the question “Can the addition of Alpha-interferon therapy for Behcet’s Disease reduce the risk of severe disease relapse over several years?” You can read a comment on the trial from one of the volunteers here. Please let us know by email if you are taking part in the trial and have any comments on it.
I attended a meeting about the trial on behalf of the Behcet’s Syndrome Society on 15th October. There are currently 34 people taking part in the trial and the encouraging news is that nobody has withdrawn due to side-effects or ill heath. All of the patients whether taking Alpha-interferon or continuing on their standard drug regime are receiving close monitoring and swift responses to any flares.
Prof Lightman attended our AGM and presented a trial update but also reiterated the reason for the trial. In Germany, open studies where Alpha-interferon has been given to patients for 6 months with severe Behcet’s disease have found it altered their disease activity and they went into long term disease remission. Behcet’s patients in Germany can now get Alpha-interferon much more easily because of these compelling findings. Prof Lightman is conducting this research in the UK to discover if the same effects are true on UK patients. If so, it would be the most significant advance made in the treatment of Behcet’s for some time as it wouldn’t be just treating the symptoms, but altering the disease. It would also provide a stronger case for requesting Alpha-interferon on the NHS for Behcet’s patients.
The trial is now established in 2 cities – 4 in London - Moorfields Eye Hospital, Barts and the London, Hammersmith Hospital and St Thomas’s Hospital - and 1 in Liverpool at Aintree University Hospital. The centre in Aintree will make it more convenient for patients in the North West, North East and Midlands to take part. The Society has also made a grant to the trial to enable patients to claim back travelling expenses.
It was alarming how many people at the AGM had received the information about the trial in the last newsletter, but chosen not to read it. To be successful, the trial needs at least 70 patients and ideally more. It is easy to think that somebody else will join the trial and you can just wait to see if it’s successful, but the trial will fail if everybody takes this course of action.
Recruitment is hoping to continue until July next year after which the trial will close and nobody will be able to have any more interferon if they are not in the trial already. If you would like more information about joining the trial either through the London hospitals or the Liverpool centre, please talk to your consultant or GP in the first instance, then give Prof Lightman/Sarah Mayhew a ring on 020 7566 2266 for more information.
The information sheet is also on this website if you would like to check whether you are eligible to take part in the trial.
Jan Mather, Chair
