Myology training in Russia
1st Russian Spring School of Myology initiates specialist training for Russian health professionals
From 17-20 May 2010 more than 60 Russian clinicians, scientists and health professionals with a special interest in neuromuscular disorders came together in St Petersburg for an update on the latest developments on diagnosis, standards of care, clinical management of symptoms and development of treatments. The four-day training course, branded as the "1st Spring School of Myology", was organised by TREAT-NMD and the ENMC in collaboration with the University of St Petersburg, AFM and GAOORDI, an umbrella organisation for parents of disabled children in St. Petersburg.
Considerable progress has been made in the last decade in the development of diagnosis and potential treatments for a number of neuromuscular conditions and keeping up to date with these advances is a significant challenge for many clinicians whose main concern is the day to day care of their patients. As most of the conditions are rare or ultra-rare, national and international collaboration between muscle centres is vital to ensure the speedy transfer of these advances into the clinic. Therefore the idea of the 1st Spring School of Myology was to initiate a training course in the style of the myology summer schools that are held in every year in London and Paris and to not only provide updates on different aspects of myology, but also encourage networking and communication between different muscle centres and disciplines, both within Russia and between Russia and other countries.
A scientific committee consisting of clinicians from Russia, France and the UK developed a stimulating programme with lectures that provided an overview of a broad spectrum of conditions including muscular dystrophies, metabolic and inflammatory myopathies and neuropathies. The presentations were given by expert clinicians from Russia and other European countries and gave the Russian participants the opportunity to compare their standards of diagnosis and clinical management nationally and internationally and also to voice the challenges they are specifically facing within their regions. There was agreement that a multidisciplinary team is essential for patients to benefit from the best possible care to improve life expectancy and quality of life. Emphasis was on improving diagnostic standards, particularly in view of the establishment of patient registries and the development of personalised medicine. The partnership with the GAOORDI patient organisation was also a very positive experience and the need for collaboration between doctors and patients was stressed during the course.
The lectures were given either in Russian or English and an excellent simultaneous translation service ensured that nothing was "lost in translation". At the end of each day a clinician from Russia presented a case study with a patient attending the course in person and a lively discussion followed that allowed the experts to share their knowledge and experience.
The feedback from the course has been tremendous and the hope is that in the coming years the "Spring School of Myology" will become an integral part of clinical training within the field of neuromuscular disorders in Russia. We are delighted to report that talks are already underway for a second course that will take place next year in Moscow.
Report by Marita Pohlschmidt, MDC
