Russian Spring School of Myology 2011

18 - 21 Apr 2011

Moscow, Russia

Venue: Russian Academy of Civil Service (Российская академия государственной службы), Moscow (www.rags.ru)

18-21 April 2011

Download the program here.

Meeting Report

by Marita Pohlschmidt, UK Muscular Dystrophy Campaign

The value of networking and sharing ideas and experiences between scientists and clinicians was at the heart of the "2nd Spring School of Myology" in Moscow.

From 18-21 April 2011, more than 90 clinicians, scientists and health professionals met at the Russian Academy of Civil Service in Moscow to take part in the second Spring School of Myology. As encouraging proof of the growing interest in neuromuscular research and care throughout Russia, a particular feature of this year's course was that as well as the core of participants from Moscow itself, 11 attendees travelled from St Petersburg and 29 from other regions of the country, including 3 from Vladivostok, 1 from Kharkov, and 1 from Kazan. The purpose of the four-day event was to receive updates on diagnosis, standards of care and therapy development. The course was organised by the patient organisation Nadezhda, the Moscow Region Paediatric Psychoneurological Hospital No.1 and the Moscow Research Institute of Pediatrics and Child Surgery, in collaboration with the ENMC for TREAT-NMD and Andoni Urtizberea for the Paris Summer School.

 

Russian Spring School 2011

 

Following the great success of the first Russian Spring School, which took place last year in St. Petersburg, this course again gave participants with a special interest in the field of neuromuscular disorders the opportunity to exchange experiences, network and set up collaborations. The inspiring course programme was developed by a Russian/French scientific committee under the leadership of Dr Andoni Urtizberea and consisted of three days intensive training in clinical and genetic aspects of a broad range of conditions, but with a particular focus on the muscular dystrophies, myotubular myopathies and peripheral neuropathies.

A major improvement this year was the introduction of three parallel interactive workshops focusing on diagnosis – the clinical approach, muscle histology and muscle imaging. During these sessions, a short introductory talk was given to small groups of 20 participants who then had the opportunity to scrutinise their expertise through case studies and exercises. The final day was reserved for Russian speakers and the lectures touched on subjects of particular interest to clinicians for improving Russian healthcare services such as rehabilitation and the development of palliative care.

In the spirit of international networking, the school has also facilitated the development of further links between Russian participants and institutions in Western Europe, with the potential for future research collaborations and sharing of expertise. Two of the Moscow participants will also attend the Paris Summer School this coming June.

At last year's event in St Petersburg, most of the participants came from hospitals or research institutions within St. Petersburg and only a few were able to travel from other regions. Several times during the workshop was it pointed out to me that the distances in Russia pose a huge challenge to the establishment of a neuromuscular network. For comparison, Moscow and Paris are 2,484 km apart, while Moscow and Vladivostok have a huge 6,430 km between them, more than double the distance. Nonetheless, some of the participants who had been at the workshop last year fed back this time that particular progress was made during the last 12 months with regards to networking and collaboration. There is now widespread acknowledgement that only if the scientific community and health professionals work together in Russia will they be able to establish the infrastructure to improve the standards of care and speedily bring new technological developments to affected families who are anxious about missing out on the benefit of potential new treatments. Therefore it was fantastic to learn that this year almost half of the participants came from outside the host city, with some having travelled the distance from Vladivostok.

 

Russian Spring School 2011

 

Again this year a Russian patient organisation played a crucial part in the organisation and the co-funding of the event, with additional support being provided by Genzyme. Members from Nadezhda, the muscular dystrophy association active in Moscow, were present throughout the workshop and it was a great opportunity to listen to their stories and to understand where their priorities are. They are currently working together with the clinicians to establish registries for DMD and SMA and boys with DMD are already starting to take part in clinical trials.

In summary, it was a fantastic experience and it was great to learn that the hope expressed last year that the School of Myology would become an integral part of clinical training in Russia was not in vain. On the last day I even heard that planning of a third workshop is already underway. Rotation of the course to one of the regional capitals of Russia will be an additional step that will help spread the latest developments in neuromuscular research and care throughout the country, and Ekaterinburg, Irkutsk and Novosibirsk are some of the candidates under consideration. I do wonder whether there is an ambition to bring the School of Myology to Vladivostok one day.

-- Marita Pohlschmidt

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