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European NMO Meeting
Summary of European neuromyelitis optica (NMO) workshop Crawley, London, 30th June – 1st July 2011.
An unrestricted grant from Euroimmun AG and financial support from the UK National Specialist Commissioning Team NMO service made this meeting possible.
On 30th June and 31st July 2011, the UK NMO teams from Oxford and Liverpool hosted a European meeting in which doctors and scientists with special expertise in NMO met to discuss their clinical and research work and the challenges facing NMO patients. Ten countries were represented: Austria, France, Germany, Greece, Hungary, Italy, Portugal, Spain, Turkey and the UK.
The topics included the role of specialist nurses and therapists in NMO; NMO affecting children; differences in the AQP4 antibody test between countries; the natural course and prognosis of NMO; and new methods of imaging the brain and spinal cord in patients with NMO.
There were presentations from representatives of each country, and four interactive workshops followed by open discussions:
1. Databasing and data sharing workshop.
It was agreed that, because of the rarity of NMO, collecting information on patients so that anonymised data could be shared between the groups was essential in order to further our knowledge of the disease.
2. Treatment workshop.
Treatments already in use for both preventing and treating relapses in NMO were summarised. It was agreed that data should be analysed from databases across Europe to determine the effects of different treatments. All groups agreed that future studies are needed to determine the best treatments for relapses and for preventing relapses. Two possible trials were discussed: a trial comparing high dose intravenous steroids with plasma exchange or intravenous immunoglobulin for NMO relapses; and a trial comparing present first line treatment (azathioprine, methotrexate or mycophenolate) with more aggressive treatment (Rituximab or cyclophosphamide) to prevent relapses.
3. Education and Information workshop.
The group recognised that written and web-based patient information needs to be developed across Europe. The UK group presented their patient information which is due for publication in the UK, and which covers a wide range of topics from medical to practical aspects of disability. It was agreed that the UK group would make this information widely available for translation and dissemination. It was also recognised that education and information for health care professionals needed to be developed and made widely available.
4. Diagnosing NMO workshop.
The group decided that a study was needed to compare the sensitivity of the AQP4 antibody test between different European centres, and to help improve detection rates. An exchange of sera between all centres will be organised as a first step. Studies are also planned to look for other blood and spinal fluid abnormalities that may be helpful in diagnosing and monitoring the effects of treatments. It was recognised that genetic studies of NMO patients are needed and that a European-wide recruitment of patients would make this possible.