Casa Di Francesca Romana, Rome

GMC meeting Casa di Francesca Romana, Rome on Tuesday June 7th and Wednesday 8th 2011

Minutes Present: Hans Forssberg (HF; Chair) Leena Haataja (LH; Secretary) Paul Gorham (PG;Treasurer) Jenny Carroll (Vice-Treasurer) Giovanni Cioni (GC) Vlatka Mejaski-Bošnjak (VMB) Lindsay Pennington (LP) Rainer Blank (RB; Chair Scientific Committee) Eva Brogren –Carlberg (EBC, co-opted member) Bernard Dan (BD;president Meeting 2010) Enrico Castelli (EC;president Meeting 2011) Meral Topçu (MT;president Meeting 2012) 8.6. Mintaze Kerem Günel (MKG;secretary Meeting 2012) 8.6. Goran Krakar (GK; representative of NomCom) 8.6. Caroline Black (CB;Managing Director of MKP) 8.6. point 17

GMC meeting started at 6.45 pm 7.6. The order of the items in the GMC meeting agenda was changed when appropriate to the order which appears in the minutes.

1. Apologies for absence MT had informed that she will be present only on Wed 8.6.

2. Minutes from the Midterm Meeting held in Istanbul on 26.-27.11.2010 Point 6. It is said in part “Action”: It was agreed that Task Force “EACD recommendations” needs financial support, and in principle there is a possibility to use up to £50,000 for recommendation process. Firstly, the need for financial support of the CP working teams has to be found out and the estimated costs have to be accepted by GMC members before further proceedings. Action: The wording in point 6 of the minutes of the Istanbul Midterm Meeting was agreed to be correctly recorded and written according to the discussion at the Istanbul midterm meeting.

3. Matters arising from the Minutes not already on this agenda Item 20:”Reporting to the charity commission”

1 4. Chairman’s report (HF) HF has been in touch with ICPS, which will arrange a parents and professionals meeting in Barcelona 17.-19.11.2011 in partnership with EACD. The meeting is organised by Luis Farres, Anita Loring and Martin Bax. Manuel Roig is also in the organising committee. Prior to the GMC meeting it was discussed by email (HF, PG, JC, LH) that EACD can give a loan of £2,500 for a parents meeting. In that case the organisers pay all bank charges for the money transfer. At the end of the meeting, if the meeting is not making a loss, they return the full £2,500 and again pay all bank charges. They also need to send the meeting accounts to JC for auditing.

Owen Hensey had sent a letter to HF asking financial support to a local meeting on disability in Dublin. PG commented that EACD has given grants to local meetings earlier. Nevertheless, EACD has not made any official policy for such support, which is needed and should be discussed at the next GMC meeting. Meanwhile it was decided that EACD will endorse the meeting in Dublin, but give no economical support.

HF also told that he and EBC have been in contact with colleagues in Truskavets (Western Ukraine) and organized there in collaboration a workshop on evidence-based assessment tools. VBM mentioned in her own talk (point 10.1) that as a specific feature there was a live real time broadcast of the meeting and communication between satellite centers. The workshop was regarded as a successful form of collaboration and promoting the function of the Eastern European Academy of Childhood Disability (Ukraine, Russia, Belarus and Kazakhstan). Action: HF will meet Luis Farres during the Rome EACD meeting in order to discuss about the EACD collaboration for parents and professionals meeting in next November.

5. Secretary’s report (LH) The amount of email communication has been steady and at the same level as last year. At present EACD has 690 subscribed members (1.6.2011). LH is concerned how to improve the communication between GMC members. The same messages have to be sent many times in order to be sure it has reached all the committee members. Action: LH will use “response required“option when sending information to the GMC members.

2 6. Treasurer’s report (PG+JC) Positive balance for the year was £35,770. The income from the very successful Brussels meeting was £30,829. At the moment the balance in Bank is £114,632. Expenditure for the year has been a total of £21,570. EC has given six bursaries, and PG reminded that these bursaries will be reimbursed. HF commented that in principle the economical stability allows financial support to different EACD activities. Nevertheless, the rules for financial support has to be cleared (look also point 4). EC estimated a significant positive balance from Rome EACD meeting. BD raised a question if the registration fee to the annual meetings should be reduced. JC commented whether the last and ongoing meetings are in fact exceptions since e.g. Zagreb and Vilnius meetings did not bring in any surplus. It was also discussed whether one should have a special reduced student fee or whether there should be more bursaries. It was also discussed whether GMC members should pay the EACD related meeting costs (travelling, accommodation, registration fee) from their funds. Action: The detailed budget of Brussels and Rome meetings will be analyzed and discussed by GMC members in the following midterm meeting in Newcastle. The aim is to understand the weight of different factors which have contributed positively/negatively to the meeting balance. JC was authorized to have the EACD credit card. PG’s authorization and contact details will be changed to JC.

7. Proposed policy for spending EACD funds (PG, JC) JC and PG had formulated an expenditure policy (attached). The main issue is who has the authorization to spend EACD finance, and when one has to ask for acceptance of GMC members and when the decision has to be brought to the AGM. Officers referred in the policy are the chair, treasurer and secretary. The policy was discussed and amended accordingly. Action: The document of the expenditure policy was supported to be presented at the AGM.

8. Report from 4 Task Forces: Point 8.1 Recommendations and Best Practise (RB) and point 9. Proposal on the EACD funding for “Recommendations and Best Practice” (RB, HF, PG) were discussed together. RB started by reminding about the reasons for the need of evidence-based clinical recommendations. Growing knowledge needs to be evaluated in a systematic, non-biased way, and the multidisciplinary clinical teams do not have resources to do it themselves. This is where an organization like EACD can help its members.

3 Final DCD recommendations will be presented at the EACD Rome meeting, and RB told that there has been a good number of requests of presenting the recommendations at other meetings. The core set of DCD recommendations is universal so it can be applied as widely as possible. The quality indicators and management as well as the implementation have to be decided nationally. The agreement of the format of the DCD publication with the Mac Keith Press (MKP) is under discussion. RB will send the recommendations to Peter Baxter (Editor of DMCN) who will decide about the detailed proceeding. HF raised the question about the copyright. RB clarified that German Neuropediatric Society (GNP) has the copyright for the Guideline, however the EACD recommendations may be regarded separately. RB has confirmed from GNP that there is no conflict of interest to publish the recommendations on the EACD website. The title of the recommendations was discussed. RB will explain the involvement of GNP in the forewords of the recommendation or in another appropriate place.

RB began the discussion on CP recommendation work by giving a synopsis of the present situation. The Task Force was formed in 2009, and this onwards it has made the following progress: 1. Decision on focusing first on motor aspects of CP and 2. the process was divided into four working groups (Trunk/lower extremity led by Steffen Berweck; Upper extremity led by Ann-Christin Eliasson; Oro-motor functions led by Lindsay Pennington; Assessment and classification coordinated by Christine Cans). After the first meeting in Brussels 2010 the four groups have been working on developing specific questions for a systematic literature search. After Istanbul midterm meeting RB asked for an official offer of a systematic literature review from the Kleijnen Systematic Reviews Ltd, which offered the service of assessing relevant papers, making a summary of the nature of evidence, grading of evidence and recommendations followed by a recommended option up to 87,780 € (55,000 € basic option).. This possible substantial investment has raised a lot of discussion via email between GMC members prior to the GMC meeting. It was agreed that GMC cannot make the financial decision of this magnitude without taking the issue to the AGM (see also the enclosed expenditure policy). There was a vivid discussion if there are any other practical options than having a centralized professional support including methodological supervision and instruction, literature search, grading of the search, evidence tables, etc. RB summarized the pros and cons of centralized and de-centralized way (based on the EACD network) of getting methodological support. LP commented that the delay of financial decisions has already had a negative effect on the oro- facial group. HF commented that we should be thinking 1. how do we get the best quality and 2. how can we finance the best option in order to have the best quality. BD reminded that the

4 preparative work of defining the clinically relevant questions for literature search is the corner stone of the foundation of the whole process. EC spoke for the importance of getting together a broader base for finance. VMB raised a question about other international initiatives. RB commented that e.g. AACPDM have already done a few systematic reviews. GC commented that the division into the four CP Task Force subgroups will inevitably end up to differently formulated recommendations. In order to avoid heterogeneity the groups should have a uniformly structured consensus about the practical approach. LP raised the principal questions whether the CP recommendations process should be continued since it is utterly manifold and complex to the extent that it may be too much for EACD. HF asked every GMC member to give her/his opinion to this question, and in the end the consensus was that the recommendations work will be continued. In the end HF raised the question whether the committee members would be for “out-sourcing” or the EACD network based approach in order to search for relevant publications and grade them. Action: The DCD recommendation will be introduced in the NC meeting, and NCs will be encouraged to bring up ideas how to distribute the DCD recommendation in their countries. RB completes the DCD recommendations layout so that it can be published on the EACD webpage. RB chairs the CP workgroup on Wed 8.6. A proposal considering the future process for the AGM will be further discussed at the continuation of the GMC meeting next day, i.e. 8.6.

9. Rome Meeting 2011 (EC) EC’s presentation was moved before the other Task Force presentations which were held on Wed 8.6. In general EC was pleased with the preparations for the meeting. EC told that there were 230 abstracts. EC thanked the scientific committee for the efficient collaboration on selecting abstracts for oral and poster sessions. There will be two poster sessions (over 80 posters on each day). EC presented the final scientific and social program. EACD Rome has received 70 500 € from sponsorship. Forty-eight countries are represented with 480 registered participants.

June 8th 2011 started at 8.35 am

The morning session was started by discussing the future plan of the CP recommendation process. It was agreed that: 1. the literature search should be centralized in order to guarantee high quality in all groups

5 2. there should be two formal bids in addition to the one already achieved by Jos Kleijnen (a total of three bids) 3. there has to be a broader base for financing the literature search in addition to EACD, e.g., through collaborations with other organizations and institutions (e.g., EU). 4. AGM should be asked to give GMC a mandate to invest in the external review and evaluation (up to a maximum amount according to the new expenditure policy) 5. after the external review the process should continue in the four established groups 6. the recommendation group should be given the task to develop a plan for distribution and knowledge transfer 7. and a plan how to continuously update the recommendations (incl.DCD) after the first versions have been published on the EACD web page.

Action: The agreed strategy for the CP recommendation work will be presented and further discussed at the CP workgroup meeting and AGM.

10.1 Central and Eastern European (CEE) countries (VMB) There are now recent acknowledged NCs from Ukraine (Oleh Kachmar), Macedonia (Filip Duma), Bulgaria (Ivan Chavradov) and Bosnia and Herzegovina (Feriha Hadžagic-Catibusic). There is not yet a NC from Albania. Aleksandra Mikov from Serbia was presented and there was a discussion whether her election should be taken to AGM. HF commented that if the candidate fulfils the criteria for NC the acceptance is decided by GMC. VMB raised the questions about the bursary policy. The new policy of six bursaries was agreed in the Brussels GMC and AGM. Bursaries cover registration fee and accommodation (both provided by the meeting organizer), in addition, 200-300 € for travelling expenses / each participant will be covered by EACD. The Annual Meeting President will decide the bursary holders. HF raised the question whether there should be more bursaries allowed by the settled finance. It was also discussed whether EACD could support financially the local meetings. PG reminded that EACD has to have clear policy for finance and RB commented that there also has to be established criteria for contents and quality of the local meetings. BD commented that it is the expertise that should be promoted not primarily other meeting costs by e.g. supporting the local meetings having GMC members as speakers. Action: Aleksandra Mikov is acknowledged as a NC for Serbia. The number of bursaries and possible additional new criteria for receiving a bursary as well as support to local meetings will be discussed again in the Newcastle midterm meeting. MT will draft a proposal for the support policy of local activities e.g. meetings. 6 10.2 Family (HF) BD expressed the idea of having a committee member representing a patient organization, and this principle was generally supported. HF will meet Luis Farres during Rome meeting. When electing new committee members and co-opted members there has to be a member who is willing to take over the lead of Task Force Family.

11. Istanbul Meeting 2012 (MT, MKG) The meeting will be held at the Military Museum Istanbul 17.-19.5.2012. Title is “Bridging from research to practice”. The local organising and scientific committee were presented. The program for the scientific meeting was discussed in detail. Generally the proposed topics were agreed with some specific suggestions for titles and speakers. The local and national strengths were integrated to the proposed program as earlier recommended. The concept for arranging breakfast sessions was clarified; applications from EACD members to arrange instructional courses should be called for in December. Slots should be kept open for courses selected from applications. There was a suggestion of having “pro & con” sessions , e.g., on practises that are not really supported by evidence (e.g. sensory integration therapy). There should be speakers included from opposing sides, pro and con, and this would allow thorough discussion on the controversial topics. A session for “meeting experts” and “late breaking news” have also been included to the preliminary program as recommended in Istanbul Midterm Meeting. The possible topics for EPNS session were discussed. BD commented that it is always a good practise to consider if there is an option to use the invited speaker for more than one talk. There are 52 open slots for free papers. EC commented that the posters should be on display the whole day. HF reminded that there has to be at least two poster sessions, and he proposed a two hour lunch break when the second hour could be addressed to poster sessions. BD noticed that “families” are very little represented in the proposals. MT stated that there will be simultaneous translation during the whole meeting. Nevertheless, there should be a targeted program (e.g. family track) to parents. BD commented that there was a special price for parents in the Brussels meeting. Budget has been prepared by Topkon (official congress bureau). Total costs are estimated to be 181 540 €. Total incomes are estimated to be 229 200 € allowing estimated profit of 47 660 €.

12. Newcastle Meeting 2013 (LP) The meeting will be held 10.-12.10.2013. The Newcastle venue Sage Gateshead offers flexibly changeable meeting rooms with full access for wheelchairs. The whole building cannot be closed for EACD meeting but this is not foreseen causing any problems. The local committee 7 members were presented. BT (British Telephone) will contribute significantly to the general organization costs (e.g. registration arrangements) for free. There is also an option that BT would provide the meeting website which can be used also for the following meetings. BD asked if there is any connection with SCOPE. LP commented that not at present but this will be discussed. Working title is “Improving opportunities for children with disabilities by linking science and practice”. All the sessions will be open for families. A special session on “Health and physical fitness” for young people with disabilities is planned for Sat morning. The session is already under construction (film making prior to event). Seven keynotes have been preliminary planned: from basic research to policy, basic science/neurology, application of basic research findings, basic science/epidemiology, development of policy, lessons from ethics, evaluation of policy-looking towards the future. Three parallel sessions have been planned; open and invited papers / debates with invited speakers taking opposing views / three poster presentation sessions. EC suggested a session for “new technologies” both to Istanbul and Newcastle meetings. The rent for the Sage Gateshead is £ 4,1472 (incl. VAT). Break even is estimated to be 454 participants (with £ 400/350 registration fee). The sponsorships are not yet included to the Break even estimation. Action: The preparations and plans are in excellent shape and well organized. The possible key speakers and further details will be discussed in the Newcastle Midterm Meeting.

13. Future Annual Meetings: Candidates for 2014 There have been two official proposals for hosting EACD 2014 Annual Meeting: Jerusalem (Professor Shaul Harel) and Vienna (Friedrich Brandstetter). It was commented that there may be competition in Vienna between the agreed responsibility of arranging EPNS 2015 and EACD 2014 meeting in successive years. Action: Both applicants have been contacted and asked to prepare a presentation for the AGM.

14. Future composition of GMC (NomCom suggestions) There were no applications to the chair position nor treasurer. Nevertheless, HF is willing to run the second three year term, and JC was already nominated in Brussels. GK presented the candidates for open nominations (2 ordinary GMC positions) who will be elected by AGM on Fri 10.6. The candidates are Bernard Dan (child neurologist from Belgium), Johanna Geytenbeek (speech therapist and clinical researcher from the Netherlands), Nicola Jolleff (speech and language therapist from UK), Oleh Kachmar (MD, specialist in functional diagnostics, from Ukraine) and Darko Milaščević (physiotherapist from Croatia). The strengths

8 of different candidates were discussed. It was reminded that it is important to have a good balance between gender, professions and regions in the GMC. It was agreed that HF/NomCom representative talks personally with each candidate during the meeting. HF asked whether NomCom should present a suggestion in the AGM since it is otherwise difficult to the AGM participants to get a fully informed picture what kind of responsibilities the new candidates should take over in the GMC and whose qualities would best suit to the requirements. Action: HF will meet Jane Williams (NomCom) who will present candidates at AGM.

15. Future composition of Scientific committee LP is stepping out of the Scientific committee. RB has his third year ongoing. He commented that it took two years for him to understand the mission of the position. Chris Morris has not sent any comments about his position. LP commented that there has to be more than three members in the committee. LP suggested the committee consisting of two representatives of each profession. BD commented that perhaps wide multidisciplinary team is not after all the key question but the committee has to be well organised. RB commented that the members of the scientific committee should have very clear responsibilities (e.g. responsibility for recommendation work or for collaboration with the local teams to construct high quality Annual Meeting program). Action: The committee has to be renewed, and the decisions will be made in the following Midterm Meeting in Newcastle. RB will ask whether Chris Morris is willing to continue in the committee.

16. Information/Communication: Newsletter, Website (HF + PG) PG commented that website needs tiding up. The payment system works mostly fine but occasionally there is a need for contacting the webpage administrator. EBC said that the webpage should be broadened to include separate site for different Task Force groups. There should be options for interactive discussion and E-learning. LP said that she would prefer leaving her present duty of editing NL. HF commented that NL editor has to be a native English speaker. PG has taken care of EACD database management and the communication with EACD webpage administrator. During the Rome EACD meeting it was discussed (HF,LH,PG) that it would be very important if PG could continue as a co-opted member and assess with transfer of these tasks to one of the new GMC members to be elected at AGM. Action: The webpage changes will be discussed in the following Midterm Meeting. PG agreed to help with webpage and database management till Istanbul meeting.

9 17. Mac Keith Press (MKP) Managing Director Caroline Black presented the new developments of MKP: new cover, E- papers (online-only), “What this paper adds” and monthly podcasts. BD commented that podcasts are a possible way of collaboration with EACD. JC asked whether there could be a link to the MKP podcast in the EACD webpage, and that was said to be possible. DMCN is among the five best pediatric journals at the moment (IF 3.019). The main MKP publications are Clinics in Developmental Medicine, Practical guidelines and Collaboration publications (ICNA, WHO). The latest development is MKP Books online. If the piloting phase is successful all the MKP books will be made available online. Caroline Black raised a question about the possibilities for collaboration between MKP and EACD. MKP offers two prices to the Annual EACD Meeting (£ 250 prize and a book prize worth £ 250). In addition, there was a suggestion for a nominated MKP lecture. Advertisement of Annual EACD meetings with a link to the congress site could be included on the MKP website. The new MKP publications are advertised in NL and MKP offers special prices for EACD members. RB told that the preliminary plan for DCD recommendation is to have a short version in paper and the long version as an appendix. Caroline proposed that one could also consider the option of having the long version of DCD to be printed in a book format. Action: RB will discuss with Peter Baxter about the further details of publishing the DCD recommendations.

18. EPNS/ AACPDM/ Other professional organisations EPNS is involved in the planning of the Istanbul meeting. LP will discuss with the EPNS President about an EPNS session at the Newcastle meeting. EPNS 2013 will be in Brussels and there will be a session on deep brain stimulation contributed by BD as an EACD representative. AACPDM should be represented in Istanbul 2012 EACD meeting. HF has received an invitation to a CP-congress arranged in 2013 in India and the organisers want to have a long-term collaboration with EACD. HF has asked for further details from the organizers, which he has not yet received. Accordingly no decisions can be made at the moment. Action: MT should contact the AACPDM representative in Rome in order to receive the contact details of the next AACPDM President who should be invited to Istanbul.

10 19. Education and Training (EBC) EBC explained shortly the history of the development of Task Force “Education and Training”. The conclusion after critical review was that developing European standards and syllabus for all professions is an extensive work. The implementation of such a syllabus is impossible without local, national organizations. The task Force group has produced a preliminary framework for interprofessional knowledge in neurodisability. HF commented that the framework could be used as a general framework irrespective of profession. BD commented that he would be willing to facilitate the further development of the “framework” via Belgian Academy of Childhood Disability. EBC had emailed NCs beforehand, and encouraged them to make proposals at the NC meeting about the future directions. HF raised a question if e.g. the key note lectures and instructional courses could be recorded at the Istanbul EACD meeting in order to be accessible at the EACD web site. MT agreed with the proposal. Action: The future directions of the Task Force “Education and Training” will be drafted based on the feedback from NCs, and this will be presented at the AGM. The framework proposal for interprofessional knowledge in neurodisability will be published on the EACD webpage.

20. Any other business JC takes over from PG reporting to the charity commission.

21. Date and place of the next meeting Newcastle Midterm Meeting 2.12.-3.12.2011.

GMC meeting was closed at 2.50 pm.