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European Paediatric Neurology Society
Board Meeting in Paris
Faculté de Médecine Paris Sud, Bicetre Hospital, Friday, March 14 – Saturday, March 15, 2008
Attending:
Marc Tardieu (MT), Paul Casaer (PC), Peter Baxter (PB), Willem Arts (WA),
Bernhard Schmitt (BS), Lieven Lagae (LL), Hrissanthi Ikonomidou (HI), Oebele Brouwer
(OB), Colin Kennedy (CK), Richard Newton (RN), Helen Cross (HC), Linda de Meirleir
(LdeM), Alexis Arzimanoglou (AA), Paolo Curatolo (Pcu), Lars Palm (LP)*, Banu Anlar (BA),
Sergiusz Jozwiak*, Rosalia Kalmanchey*, Niklas Darin, Jose Ferreira, Thomas Sejersen,
Nina Barisic (NB), Dana Craiu (DC), Ingeborg Krägeloh-Mann (IKM)
*CNA delegates

1. Apologies: Sotiris Youroukos, Florian Heinen
2. Minutes of the board meeting, 25th September 2007, Kusadasi, Turkey, were
reviewed and approved. Minor amendments made prior to approval
3. President’s
The president has sent out a draft for a newsletter to members. Aware some items may not be covered but wishes to keep newsletter limited to two sides of A4. Some minor amendments to English were made. Newsletter covers goals of the board, meetings in which we are involved, courses, journal and membership fees, expanded Europe and the website. LP and CK have both had some attendance at meetings of the European Academy of Paediatrics (EAP). Three meetings, Cyprus, Brussels & Grado Italy. A new constitution will be introduced for this new academy. There is a strong parallel with our own constitution. It will be a society of individual members; the paediatric section of UEMS will be composed of two representatives from each country (like CNA has one national adviser), with a bridging structure between the Paediatric Section of the UEMS and the EAP called a board. There is a problem in that there is no real structure for subspecialty views to be expressed. There is a tertiary care board (where paediatric neurology lies) but in future any individual member of EAP will belong to one of the care boards. There will be no subspecialty representation as UEMS does not recognise such. Some correspondence is ongoing with the Chair of EAP, who wished to hear more about the constitution of EPNS as a possible model. Also a European examination is increasingly talked of to be considered towards the end of training; which would be optional, and in English. It would be thought to possibly be of use to those who wished to practice outside their own country. The second congress of EAP will take place in Nice October 24 to 28, 2008. It is a joint meeting with the paediatric research meeting, a mainly neonatal meeting. EPNS is responsible for a half day. LdM & PC agreed to attend a meeting about this, and have proposed a neonatal neurology session to include neonatal convulsions, neuropharmacology, neurometabolic disease. It is unclear whether a half day is required or a daily topic. This is to be clarified. Also it is unclear as to the financial arrangements. CK to write to Jose Ramet, with copy to Nikki Roberts (organiser) and also Lars Palm who will be at the next meeting. Need answer soon as to whether we should proceed. WHO still interested in collaboration. It funded some people to come from the Commonwealth of Independent States to the Kusadasi meeting. Since a wish was indicated to develop training modules, and do piloting in certain countries as well as monitor the need for technical support, CK responded and is waiting to hear. EACD links. Liaison ongoing with regard to Zagreb meeting. CK (+ may be also AA & LP) will attend the Board meeting. There is also a possibility of interaction with our meeting – such as an input to a paramedical (nurses etc) meeting in Harrogate. For discussion. 4. Secretaries’
To continue to send reports of subcommittees as soon as possible. Sue Hargreaves has been employed through BPNA office, 5 hours/week to liaise membership, subscriptions, email notices, liaise website. BPNA claim back salary from EPNS. Advantage to EPNS is that BPNA ensures that employment is covered at all time, and takes responsibility for other employment issues. 5. Treasurer’s
Expenses total Estimated expenses for one year about 100,000€. (included EJPN, meetings, secretarial support etc) Income 78 761.08€ (includes membership fees, two years royalties, ended Leuven and Heidelberg accounts, profit from Groningen course). Continuing with Worldpay, now paying into a Dutch account of EPNS. Estimate annual income 81 000€ including membership fees, royalities, EJPN, and interest. It is, thus, less than estimated expenses. The Kusadasi congress made a 30 000€ profit for the society but only 15000 are available as the other half was used for the training course. The training course in Kusadasi cost 32350€ with a registration income of 15 000€ with EPNS providing 15000, so there was a small deficit. It was also proposed to open a separate account for a EPNS learning fund into which €50000 to pay for courses and scientific meetings would be transferred from the Society’s existing positive balance in the general account. This fund is to be replenished with income from courses, congresses and sponsors. Agreed by board. Membership fees: 237 already paid for 2008. But about 200 members still do not pay in year fees due. 71 memberships were cancelled as no payment had been made since 2002. Proposed fee
6. Scientific
Committee
The programme of Kusadasi was discussed with only positive comments . Some discussion concerned minor issues of organisation which were more related to the agency involved. The highlights session was very much enjoyed by the participants. A shorter teaching course prior to the congress was discussed, now that the smaller interactive courses have been moved outside the congress. This could bring in more money, and an earlier attendance to congress. The experience with the awards selection was difficult as it was done the first time. There are further plans for Harrogate -chairs to choose the best oral presentation for each session and Poster-evaluators to determine the best poster for each session.(for the last a number of topics has to be defined prior to the meeting with three evaluators per topic) The workshops went well, both opsoclonus myoclonus and epilepsy. There was a discussion as to the need for separate fee – if so, it should be well organised from the beginning. But the best solution would be to increase the global registration fee by 5€, and keep it open to anyone who wishes to come (format of expert discussion with participation from floor). With regard to EPNS 2009 this would occur on Wednesday morning; suggestions for topics are treatment in muscular dystrophy and replacement therapy in neurometabolic disease. The board agrees to the principle of incorporation of registration. Topics to be further discussed. The Research in Progress meeting is to be held in October. It must have the orientation of people coming to present current research work with attendance by fellows. Chairs of each topic should be proactive in getting people to attend. Note not funded. Funding for individuals should be found by themselves. Discussed EPNS 2009 programme – see below EACD 2008 meeting. A joint symposia on ADHD, comorbidities in epilepsy and neuroprotection is planned and organised. EACD 2009 under discussion. It is planned to review the scientific programmes of the past seven meetings of EPNS –need to approach individual organisers. Congress
Very successful congress enjoyed by all. Report was given by BA initially on the finance. 744 participants who registered with additional speakers. Total profit 60 000€, 50% retained by local organisers. As given above (point5), the course lost money (budget was for 75 participants, but 135 attended).
8. Statuskonferenz – European Research Conference
The European Research Conference on Paediatric Neurology is scheduled to take place in Tübingen, Germany, from Friday, October 3 to Saturday, October 4, 2008. The programme is centered on exchange in 8 working groups, there will be 4 additional plenary lectures on existing national or European networks and an overview on European funding programs. Chairs of working groups to coordinate sessions. Invitations are sent to EPNS members and CNA members (to advertise in the national societies). The meeting will be without sponsorship by industry. Registration will be about 65€ per person plus accommodation. Any profit to go to central EPNS learning fund. Numbers per group were suggested to be about 20 - not fixed but numbers should be kept small. Individuals who wish to be involved need in first instance to go to IKM, then group chairs. To advertise more widely, the fact must be emphasized that individuals fund themselves. To circulate to EPNS, CNA. When people register, they need to indicate what they are going to talk about. At the next board meeting the future will be need to discuss – will it remain in Germany, or move outside for another country to organise. The proposal is that it should be held in alternate years to the congress. Congress
A draft programme was discussed at the Scientific Subcommittee (see also point 6). The official start is Wednesday 30th September at lunchtime, through Saturday 3rd October at lunchtime. A highlights session as at the last meeting should also be added. A debate session was suggested and personal practice sessions are held as breakfast sessions. The programme will be finalised in 6 weeks so speakers can be invited. The website will be up and running by July 08. Abstract deadlines have to be discussed with Elsevier.
10. Journal Liaison
A meeting took place in December between the journal (P Bakker) CK, LL, and HC. An agreement is now almost ready for signature, it is for 4 years – then renewable. The proposals with regard to reduced on line subscription are shown in the table below together with proposals from the executive committee of the board (of The Society) as follows (see also point 5): World Bank
Proposed fee
EJPN subscrtpn
Net to Society
per annum
Some concern was expressed concerning trainees, but it was referred to that class 4 trainees have 30€ discount for membership fees. Applying this to proposed new fee structure¸their fee will be 90€, and for trainees in class 3 countries it will be 55€, in class 1 and 2 countries 40€ 11. EJPN Newsletter
Newsletter should not be produced for every issue of journal as previously discussed, but rather two or three times a year. Board meetings will be reported as short synopsis of main points.The main outcomes from the working groups at the Tübingen meeting should be included as another newsletter item.
12. EJPN Editor’s report
An editorial board meeting was held in Turkey. The next will be in Warsaw. . Three review papers were submitted from guest speakers and two were accepted. There is a high rejection rate for single case reports. The EPNS newsletter is well within the numbers of pages available to the Society (24 per annum). New items include Stuart Green Vignettes which gives short clinical presentations with occasional comment. There is a supplement for the Warsaw meeting and one, sponsored by Cyberonics, on VNS therapy planned. Consensus papers on opsoclonus myoclonus, and intrathecal baclofen are envisaged. 13. Website - changes
When ‘EPNS’ is googled, the website comes up immediately. It has been completely reworked. Links are working including to the journal website. The syllabus is not yet there as it yet as it was unclear as to whether they should be there prior to the updated. The scientific committee page is awaited which should include a list of members of that committee. Details of courses and how to go about organising courses also present. Further details on training are required. There is perhaps a need for a CNA button – easier and less expensive to use an existing page rather than create a new one. The Membership form is available and subscription can be paid on line. Further details on meetings are required. Whether details of individual member society meetings should be available was discussed– preferable for links both ways to national society websites. The latter is there but incomplete. Request from PB for details to be sent through to him as well as suggestions for changes to the website by email – request to national societys should be routed through the secretary of the CNA (Rob Forsyth). His details and those of other CNA members should be available at the CAN button. It was agreed that unapproved board minutes should go on the members only section of the website once finalised by executive. Assembly minutes should go on unapproved and labelled as such (as wait two years to be approved at the next meeting). The newsletter should also be featured on the website. BS volunteered to help PB with website 14. Constitution of a membership committee
A membership committee has been in existence but the role of this ha s been unclear. A proposal for this to be developed and expanded, perhaps renamed, the role of which would be. • Presence at other meetings in Europe eg Zagreb, Warsaw • Presence at EPNS meetings eg Harrogate • Development of a ‘Brand’ –eg roller poster, use of logo; flyer • :to develop information for EJPN and use of journal for EPNS purposes • To develop aspects of website related to attracting members including links to • Disseminating information about special discounts of membership • Developing a strategy for attracting trainees, liaison with CNA etc. It needs a member of the board who is enthusiastic to chair and drive this with other members of the committee. Proposed membership in addition to chair to be one of secretaries of the board, secretariat (Sue Hargreaves), treasurer, senior editor of journal and website lead. Following discussion, Richard Newton volunteered to chair the committee. HC will be the secretary representative. 15. Financing and sponsorship
It was agreed that this agenda item should be adjacent to the treasurers report in future meetings. The separate learning fund is a good idea. However, the society will run a deficit of €10, 000 per year by current figures for courses (balance of profit vs loss is quite variable). The general fund will also run a deficit that would increase if the journal subscription increased without an increase in membership fee next year. The budget, thus, depends on the congresses for profit – should we rely on this? There is no problem with this in the short term but the board needs to plan for long term. Sponsorship is not as readily available at present – the only sponsor income is for congresses. It was suggested that it may be easier to get sponsorship for the learning fund as educational grants. 1. Commercial Sponsorship: Epilepsy funding is less than previously, but companies may be willing to give small amounts. Also companies producing products for use in other conditions are now also available. Need to consider package that could be offered. If individual board members have contacts to make PB aware. It needs planning this year for application in the 2009 budget. 2. Individual sponsorship: It may be that there are families we treat who would be 3. Can we make more money from congresses Suggestions are: Use university venue, use EPNS secretariat (Harrogate will use the BPNA secretariat as conference organisers). NB is to consider the extent to which EPNS secretariat can help with 2011 congress. Use consistent central agency to deal with congresses, registration for teaching courses. It has to be remembered however that WA obtained a quote from a professional agency to organize several EPNS congresses but this was more expensive than the arrangements that were finally made. Moreover the organisation of future meetings has already been reviewed in proposals and agreed. 16. .Education and Training Committee
Committee did not discuss all necessary topics on this occasion owing to time restraint Training courses Warsaw has currently 50 subscribers, including 20 from Poland and 15 from Eastern Europe (all looking for sponsorship). No specific sponsorship, and registration fee is less than previously so there is a risk of loss. The programme however looks excellent. Bursaries for 14 applicants have to be discussed. PCu is the lead for decision. The main aim is that training courses should run no more of a loss of €15000. PCu proposed that each should pay 50€ to show commitment. Then EPNS would meet the remaining 100€. Travel expenses will be provided up to €250. Two nights accommodation will also be covered. This would be around €550 per person (currently €7700, which is less than €10000 as originally agreed). This was agreed. Those to be in receipt of bursaries will need to pay for travel and send bills to WA with receipts for reimbursement. ii) Romania: new cycle of courses. It was decided that they are held at a venue in the country, which is 3 hours from the airport, but advantages appear greater than disadvantages. Dates of the first two courses: 26 April – 1 May 2009 (to be confirmed) Estimated cost one course 500€ and two courses 675€ (inc registration fee, accommodation and food). Bursaries to be discussed. iii) Content proposal 2009: I Epilepsy/neurophysiology, II Developmental delay/neurogenetics; 2010 I Neurocutaneous disorders,neurooncology and neuroradiology, II disorders of motor function/ (re)habilitation; 2011 I Neurodegenerative and neuromuscular disorders, neuropathology, II congenital malformations/neurosurgery AA mentioned a further course on epilepsy surgery in May 2009 which aims at higher level trainees – may be a conflict for lecturers. The level EPNS courses aimed at were discussed; should it not be at higher level than basic training. The ICNA meeting will also be in mid May 2009. Need to review dates. Syllabus review First discussion about changes proposed by LP. Discussed whether some principles in the first instance should be discussed by the board but preference expressed for final amendments to be discussed by the board at the Autumn meeting. The new proposal has to be agreed at first by the E&T committee (April 2008) and sent for final approval to the board; it would then be discussed with the CNA at the end of 2008. Ultimately it needs to be put to the EAP and adult neurology board (discussion about who is representative on the latter, presumed to be still Brian Neville so it should be sent to him) Meanwhile existing syllabus to be posted on website Other issues not yet discussed i) Do you need to be an EPNS member to apply for a bursary for courses – overall view is that you should, now that proper scheme of reduced membership fees is in place. ii) Accreditation (EACCME) to be applied for with regard to courses; to be iii) Scholarships Not further discussed following last meeting – to be brought to iv) Teaching course attached to 2009 congress – to be discussed v) Website – already agreed part on E&T committee will be restructured and
17. Training Advisory Board
A previously visit and report has been made with regard to training in Holland. Holland will be asked as to whether any impact was made by such a visit. In December 2007 Estonia was visited, a report is prepared, some editing has to be done but it is generally accepted. It is planned to publish the reports on the website, and in the newsletter We now have a waiting list of countries who wish evaluations to be done. The plan is to go to Romania in Spring 2008. The board has also asked by Poland, Slovenia, Georgia, Germany and possibly others. It could plan an elected group who could split visitations between them. A request is submitted prior to any visit for best documentation - population, no. of training centres, facilities, training syllabus, official status of specialty, no. of trainees, examinations etc. Also what is the purpose of the request for the visit. It is stressed that this is not an accreditation of centres, but an evaluation of the training programme within a country as a whole. It is also to give advice. It would need to be a representation of the country as a whole. 18. Expanded Europe Committee
The last congress was thought to increase the scope of participation. A reduced subscription is likely to lead to increased membership. Also letters will be written by EPNS board members to their country-colleagues highlighting awareness of financial issues and reduced subscription. Exchange of trainees (scholarships) – a cooperation with the E&T committee is envisaged. A request is made for target and receiving countries to volunteer. The variable availability of resources between countries was discussed. Without sponsor income it is difficult to set up a bursary programme such as that provided by EPNS. The first conference of the newly formed Ukrainian Society will be held next year. There should be a discussion with ICNA about how to raise the presence of both societies at this meeting How can we push exchange between departments or countries – how long is appropriate? No actual finance plan is probably possible, but information of possible organisations to whom s to apply could be made available on the website. Perhaps on the E&T page (or rename link currently called employment). This issue needs more discussion in order to consider possible long term funding 19. CNA report
The CNA has not met since it met at Kusadasi after the board meeting with good representation from over 30 countries. A discussion with WHO and medical care in Soviet Union was initiated – to be continued. There was an election for CNA representation on the board – Rozalia and Sergiusz wereboth re-elected, and further election will take place this year. Bursaries were given for attendance. It would be good to consider the timing of the meeting attached to the congress in 2009, which needs to be prior to the Congress – Wednesday am would be a good timing, with a joint session with the board at the end of the meeting. The timing needs to be made clear to members of the CNA well in advance. It was discussed as to whether CNA fund contributions could be made via Worldpay on the website – to be explored (PB) It was also discussed whether we as a board should have any influence or criteria as to how representation of a country should take place – we need to rely on local societies to sort this but it was considered a good idea to make a suggestion for a limited term of representation eg 4 years with re-election. 20. Matters arising from the minutes but not on the agenda
i) ‘membership’ committee. RN was asked to comment on plans. A suggestion was made to contact everyone for an initial request for brainstorming ideas for how we may enhance presentation and aid recruitment to the society. RN will discuss with Sue Hargreaves, and ultimately the rest of committee with plans of how to execute a strategy and report back to board next time. Suggestion for flyers to circulate. (also flyers for Harrogate meeting, circulate powerpoint slide but also cards) 21. Any other business
i) EPNS 20011 Dates need to be finalised. Originally proposed May 9 -11 in view of low cost and good weather. Option Oct 19-22, cheaper but bad weather is more usual. A decision was made for May. An attempt to organise a joint meeting with nurses should be made. ii) Distance learning course. At invitation of German groups a presentation is planned in July; to be distributed to a limited number of trainees as a pilot. It is also aim to discuss progress with trainees in the Netherlands. The course is being updated, and will be available on the web over the next 6 months which will widen availability. 22. Date of next meeting and closing remarks
Brussels 7-8 November 2009 (CNA to meet Saturday morning 8 Nov so that they can have a joint dinner with the board Friday evening). Executive committee meets at 11am Friday, subcommittees to meet from 12 (or earlier), board at 3pm, and continuation Saturday pm. CK to write to Jose Ramet with regard to clarification about Nice 2008 Finalisation of workshop topics and possibility short CPD session Harrogate Raise awareness of research meeting Ask Rob Forsyth to email CNA members for details for links of Society websites for website Details of local or regional commercial contacts to PB Review degree to which central secretariat can be used for congresses and training courses Revision of syllabus Details about possible bursary application for BA (and EEC) ,PB exchange, to go on website Make CNA aware of timing of meetings To discuss whether CNA contribution can be made through Worldpay via website Action pack (flyers for conference, EPNS, banner etc) Organisation of next board meeting Brussels LdeM

Source: http://www.epns.info/documents/BM_Paris_Mar_2008.pdf

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