|
Unfortunately, only one centre ( Sheffield ) has reached this recruitment target and many of the other centres are struggling to find participants. Recruitment for the trial closes in around 6 weeks, so we are very keen to raise awareness of the trial amongst people with MND who may be eligible to take part. The trial centres needing to recruit are in London (King’s and the National Hospital ), Plymouth , Preston, Oxford , Birmingham , Salford, Newcastle and Liverpool . Participants will be on the trial for 18 months and would need to travel to the centre a total of 14 times during this period; this would include weekly visits for the first 4 weeks. Travel expenses can be covered. If you think it would be feasible for people in your area to take part in the trial at one of these centres we would be very grateful if you would consider publicising it, perhaps in the following ways: - Discussing it at open meetings.
- Mentioning it on your website and/or in your newsletter (if this will be published within the next 3 or 4 weeks). Please feel free to use some or all of the text in the attached Word document – please insert the name and details of your nearest centre where appropriate.
- Asking Association Visitors who are involved with your branch to discuss it with people they visit – we will be contacting AVs separately but as not all of them have email, please do mention it to them.
The trial is open to people with ALS who experienced their first symptoms 6 months to 3 years ago. They need to be taking riluzole but should NOT already be taking lithium. The trial is not open to people who use non-invasive ventilation or have a PEG. Fifty per cent of the participants will be randomly assigned to take a placebo (dummy drug) for the duration for the trial. Neither they nor the doctors and nurses who complete the tests during the trial will know who is taking the placebo. When they attend the centre for their visits, they will have to undergo blood tests and the standard neurological tests that people with MND generally receive as part of their ongoing care. They will also be asked about how MND is affecting their day to day activities and quality of life. People who wish to take part should contact their nearest trial centre directly. Attached is an information sheet that gives more detailed information on lithium and the trial (including trial centre contact details), as well as an information sheet that covers more general issues about taking part in clinical trials. If you would like hard copies of these information sheets, they can be ordered from MNDConnect. You may have heard that a clinical trial of lithium in North America has recently been stopped. This trial was not stopped because of safety concerns – more information on the reasons for the American trial stopping is available athttp://www.mndassociation.org/news_and_events/news_room/press_releases/us_lithium_trial.html . If you would like any further information or have any questions, please do not hesitate to contact the Research Development team at National Office on 01604 611880 or via
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
This clinical trial is the first to be funded by the Association and is co-ordinated by academic institutions using existing centres of excellence in MND care. A successfully completed trial (whatever the outcome in terms of the drug itself) would pave the way for more large scale clinical trials in this country in the future. Although clinical trials are experiments that may eventually show a drug to be ineffective, they all make a valuable contribution to our knowledge and participants hopefully gain some benefit from knowing that they have made a positive contribution to research. Thank you very much in advance for your help, and many apologies for clogging up your inbox if you are located too far away from a trial centre for this email to apply. Best wishes Kate Arkell Research Information Co-ordinator Motor Neurone Disease Association |