Minutes of the Training and education Task Force Kick Off meeting

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Minutes of the Training and education Task Force Kick Off meeting ...

    Minutes of the Neuromyology Curriculum Taskforce meeting, 8 May 2008

    Minutes of the Task Force Neuromyology Curriculum

    Kick Off meeting

    Thursday 8 May 2008, Exchange Avenue, Schiphol



    Annette Boersen (ENMC, The Netherlands)

    Bruno Eymard (Paris France)

    Emma Heslop (Treat-NMD Newcastle, UK)

    Peter Streng (ENMC, The Netherlands, chair)

    Beril Talim (Ankara, Turkey)

    Marianne de Visser (Amsterdam, The Netherlands)

    Mattias Vorgerd (Bochum, Germany)

Annelies Zittersteyn (ENMC, minutes)


    Kate Bushby (Newcastle, UK)

    Niklas Darin (Göteborg, Sweden))

    Eugenio Mercuri (Rome, Italy)

    Mary Reilly (London, UK)

    Michael Rose (London, UK)

    Volker Straub (Newcastle, UK)


    Peter Streng welcomes those present and informs the meeting that Pauline Evers is ill and will not extend her contract as Project Coordinator TREAT-NMD as from 1 July 2008. ENMC is looking for a replacement and proposals for candidates are highly welcome. The replacement for Pauline should take the supporting and facilitating lead for this taskforce and we also look for someone take the scientific lead for this taskforce.

Introduction, background, aims for the meeting

    Peter shortly explains the setup and goals of Treat-NMD and the role of ENMC as a partner in Treat-NMD.

    In the framework of Treat-NMD?s workpackage Training and Education, a possible European Neuromyology Curriculum is described. The idea of developing a European curriculum was received with enthusiasm and received a broad support during the last Treat-NMD Governing

    Minutes of the Neuromyology Curriculum Taskforce meeting, 8 May 2008 Board meeting. After research it appeared that there are 3 European countries (Turkey, France, The Netherlands) with a curriculum either existing or in progress.

    During an introduction round the participants present themselves and provide a short overview of the situation regarding Neuromyology training programs in their countries. Bruno Eymard introduces himself being an adult neurologist involved in NMD since many years with around 20.000 patients divided over 10 muscle centres in France. He is also Director of the French Myology course which was started 10 years ago by Michel Fardeau. In France, there are two leading centres involved in Myology (Marseille and Paris). France has a national course for Myology with a national certificate, directed by Marseille and Paris. This course takes place from November until May and there are 6 programs of 2 days. There are 25 45 students per year, so now after 10 years there are 300 graduates. The certificate is nationally recognized, the teaching language is French, the course is considered very useful and students are satisfied. After completion of the course a diploma is issued, but the course is not officially accredited. The registration for the course if open to medics as well as scientists as well as supportives like physiotherapists (important for AFM). In general 2/3 of the course participants is paediatrician or neurologist. The course covers ? fundamental aspects and ? medical, scientific aspects. Although the diploma does not have legal status, it is preferred to work in one of the 10 neuromyology centres in France.

    Next to this, there is in France the Summer School organised by Andoni Urtizberea, an English spoken course from 10 days with students from all over Europe. It is very popular, has about 40 participants each year, cheap and international. The summer schools are focussed on myopathies. Peripheral neuropathies are addressed in 3 or 4 other courses. All participants have been selected by their University. The French summer school cost ? 300,-

    per person and French participants are free from costs.

    Bruno explains that neurologists in smaller hospitals often have no experience with neuromuscular diseases and sometimes do the evaluation on their own instead of sending these patients to one of the 10 centres in France. He considers the main goal of the European neuromyology curriculum to increase the knowledge of the physicians. Bruno indicates that the number of residents in neurology is diminishing. The development of a European curriculum would be very timely and much supported by France.

    Matthias Vorgerd is director of the Neuromuscular centrum in Bochum, Germany since 1996 with a huge number of out- and in- patients and a muscle biopsy lab. In Germany there are 24 muscle centres of which Bochum is the most active. There is no curriculum in Germany but the need is certainly there. Matthias is continuing the work of Volker Straub and Hanns Lochmueller for MD-Net. A proposal for another 3 years of MD-net funding is applied for at the Ministery of Education and Matthias hopes to get it granted in August/September. This grant request incorporates the development of a neuromyology training program in collaboration with TREAT-NMD.

    Beril Talim works mainly in Muscle pathology at the Hacettepe university in Turkey. There is a curriculum developed for and accepted by the Hacettepe University in Ankara and is now at the State for approval. The duration of the programme is 2 years for one or max. 2 fellows per year. Lecturer is a faculty specialist from the department. The aim is to train more people in the NMD field, aiming mainly on muscular dystrophies. A course consists of a lecture of 2 hours per week (for a midterm) presentation, followed by questions; very interactive and one-to-one. A graduate receives a Master of Science degree and they can work in hospitals all over the country. There is no funding available for the fellows. Emma Heslop informs that funding may be possible to fit in the Marie Curie programme, she will come back to this later during her presentation.

    The program is mainly similar to the AAN program, with the main difference that the Turkish program also covers for paediatrics.

    Minutes of the Neuromyology Curriculum Taskforce meeting, 8 May 2008

Marianne de Visser is an adult neurologist based in the Academic Medical Centre in

    Amsterdam, The Netherlands.

    In 2001, a core curriculum for an adult neuromuscular fellowship was developed. This is not an official credited program but it is endorsed by the Dutch society of Neurology. Marianne hands out a paper with the minimum set of criteria for this training program. This curriculum does not show many differences compared with the AAN curriculum, but the following should be noted.

    - It has no access for paediatrics

    - It is not officially accredited

    - It has no formal evaluation

    - The AAN program does include a more extensive electrophysiology and skin

    examination program

    - No specific lectures are incorporated in the program.

    In Holland there are 8 University hospitals of which 7 have neuromuscular centres. A charity institute (Prinses Beatrix fonds) sponsors 2 fellows per year (costs are about ? 70.000,- per

    year per fellow). The fellowship is for one year full time and the fellow participates actively in small research topics and should see at least 200 patients with a variety in NMD annually. For admission to this program, a neurologist training is required. There is no certificate or diploma. The training is very popular and many more applications than can be financed are received every year. This year even an application is received from Belgium. The selection of applicants is done by a separate committee that uses as set of criteria to assess the applications. After graduation, the fellows usually go to community hospitals. It is already evident that the knowledge of NMD in community hospitals is increasing: Neurologists do not evaluate patients themselves, recognise better and refer the patients to one of the NMD centres.

    Recapitulating it is agreed that there are lots of similarities between the programs, and that the differences can be explained by the areas from which they are approached (paediatrics, neurologists, geneticists). All agree that clinical hands on experience needs to be built during the training program.

FP7 Marie Curie ITN call for proposals, presentation by Emma Heslop

    Emma Heslop represents Volker Straub and Kate Bushby and confirms that the UK have no curriculum. However, through the Londen MRC centre a curriculum may be set up. The objectives of the FP7 Marie Curie call, which was posted 3 weeks ago, were presented. The program is very keen on including private companies and industry. In fact, industry should be present at the highest possible level (i.e. full network partner). The Marie Curie program is focussed heavily on research. It may be discussed whether a clinical training can be applied for as well. Some of the participants at the meeting have tried this before, and clinical training was then not allowed. It was therefore concluded that this call cannot be applied for regarding financing the neuromyology curriculum.

Requirements European NeuroMyology curriculum


    The meeting discusses if there is a need for developing several curricula because patients can be seen by adult and/or child physicians/pediatrics and facing the reality that various specialists see the patients. All agree to develop one minimal set of requirements with clear goals and objectives (the basis for this document will be the Dutch program), bearing in mind that 27 European countries have to endorse this. A proposal for the minimal set of requirements was agreed upon during the meeting (see attached document).

    Information on certificates and maintenance training will be discussed at this moment, but will be incorporated at the later stage of development of this curriculum.

    Minutes of the Neuromyology Curriculum Taskforce meeting, 8 May 2008 Accreditation

    All participants have connections with various organisations (WMS, UEMS, MD-net, UNEW, TNMD, EPNS, AAN, EFNS) and it is important that the set of criteria has a broad support throughout Europe.

    It is important that there is a medical/scientific lead for this neuromyology curriculum taskforce and it is agreed that Marianne de Visser with her experience in The Netherlands and her connections with UEMS is the appropriate person to take on this responsibility, and Marianne is pleased to accept this.

    With regard to accreditation, Marianne does not think that the approval of WMS is necessary. It has to be approached nationally and each country should decide on their own approval bodies. The curriculum will also be sent to the other members of the taskforce, asking for their input. Michael Rose will be asked to advise about rolling out to the other countries via EFNS. In June during the next meeting of ENM, the European curriculum will be presented by Marianne and Matthias to the chairman of the ENM board, Zogar Argoff. With regard to a timetable, we are aiming to present the curriculum at the TNMD board meeting late June 2008. Marianne will check with the president of UEMS what on the status of establishing criteria for core curricula. Exchanging UEMS residents is difficult because of lack of financial resources. Funding might be possible in the future from Eastern Europe. ENMC will look into the possibilities for funding of the curriculum.


    Peter thanks those present for a very stimulating and productive meeting. Agreed is that results will be collected first and then it will be decided if a face-to-face meeting or a teleconference will take place after the summer.


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