The SP Neuropathies met during recent EAN Congress in Amsterdam. Co-chairs Davide Pareyson (DP) and Peter Van den Bergh (PVdB) welcomed the 16 attending members. The following themes and activities were discussed.
1) The relationship with the Peripheral Nerve Society (PNS) is progressing. PVdB interviewed Mary Reilly (interview published in EAN Pages July 2017) and the insights in guideline procedures are developing. Pieter van Doorn and PVdB are quite committed and have attended 2 workshops organised by the EAN guideline production group (Maurizio Leone and Simona Arcuti). Preparations are underway to start with a EAN/PNS GBS management guideline to be followed by a 2nd revision of the EFNS/PNS CIDP management guideline. As the EAN has decided to use the GRADE system for EAN guidelines, we and others have made a plea at the panel chairs’meeting for adequate methodological support, which is crucial and necessary for guideline task forces.
2) Ian Fyfe, Associate Editor of Nature Reviews Neurology, was invited to attend the business meeting to give information about what the journal is currently doing in peripheral neuropathies, and what his team is looking for in terms of manuscripts. Over the last year only, 4 papers have been published (CMT-2015, GBS-November 2016, diabetic neuropathy-March 2017, assessment of neuropathies-advance online, nonsystemic vasculitic neuropathies-advance online).
3) Proposals for Lisbon 2018 Program and for Oslo 2019 (Including Joint PNS-EAN Initiatives). There is a novel road map for Oslo 2019 proposals. Of the several proposals submitted for Lisbon 2018, two were approved for presentation: 1 teaching course on peripheral neuropathies and 1 focused workshop on GBS. Title of teaching course: How to approach a patient with neuropathy: from symptoms to diagnosis – a PNS and EAN course (level 2) (E. Nobile-Orazio, Milan). Title of focused workshop: Guillain-Barré syndrome: New developments in immunology, electrophysiology and treatment (P. Van den Bergh, Brussels). Only 2 of our panel’s proposals were accepted, but compared to the acceptance rate in other panels, this is not a bad result. More than 200 proposals had been submitted for the Lisbon congress, which explains why the selection process is quite stringent. The 5th EAN congress will be held in Oslo (and the 6th congress in Paris). Proposals for 2019 Oslo: for each congress there is an overarching theme (Outcome measures for Amsterdam 2017, Neurogenetics for Lisbon 2018). This needs to be decided for Oslo 2019. We have time until 31st August for proposing an overarching theme. The following themes were discussed during the panel: novel therapies (including both gene therapies/gene targeting and immunological therapies/cellular therapies); possible alternatives: mechanisms of neurodegeneration, disease prevention and Quality of Life, neuroprotection.
4) At the Panel Chairs’ meeting, there was much debate about the problems of communication between panels and with EAN bodies. PVdB and DP believe that this discussion was useful and will likely help in improving the communication process in the future. Since the EAN Scientific Committee would like to improve its communication with the Scientific Panels, 3 Scientific Committee Members have been identified as “liaison officers” with the panels. For our panel, this will be Prof. Nadine Attal.
5) The PNS is a worldwide organisation. The possibilities of collaboration between the EAN and the PNS have been discussed with the EAN Liaison Committee (which will be renamed Communication Committee (D. Voducek) and the PNS board (currently presided by M. Reilly, Steve Scherer President Elect). As formal collaboration appears to be very difficult because the PNS is not a European organisation, collaboration on specific projects is perfectly possible. This applies to Joint proposals (science and education) for the scientific programme of the congresses (which has been the case since many years, formerly also with the EFNS) and for EAN/PNS guidelines (EFNS/PNS guidelines on inflammatory neuropathies have been published since 2005). The idea of a European Chapter of the PNS was discussed since this would enable the creation of a ‘memorandum of understanding’ between the 2 organisations. The feasibility of such a project will be brought up at the PNS board meeting in July during its annual congress in Sitges, Spain. As panel co-chair, PVdB did interview M. Reilly, PNS president for the EAN pages (to be published in July of this year).
6) Guidelines (GRADE system). Several EFNS/PNS guidelines on peripheral neuropathies do exist since 2005-2006 and some of these have been revised in 2010. A new EAN/PNS guideline on GBS (P. van Doorn) is planned and several EFNS/PNS guidelines are up for revision (CIDP, MMN, PDN). Several potential new guidelines were discussed (hereditary ATTR amyloidosis, hereditary neuropathies – CMT, mononeuropathies). Proposals need to submitted to the Guideline Production Group and approved by the Scientific Committee. The rules have changed and the GRADE system has to be used for every EAN guideline. As GRADE is based on RCTs and Cochrane reviews, it works well for therapy guidelines but much less for diagnosis. P. van Doorn, C. Krarup and PVDB have attended at least 1 EAN guideline workshop. Three important logistic issues emerge: (1) EAN/PNS guidelines on neuropathies would have 2 parts (A diagnosis and B therapy). Part A would include consensus statements (obviously based as much as possible on evidence) and Part B would follow GRADE and lead to recommendations; (2) because of the inherent complexity of GRADE, guideline task forces almost inevitably need to include a GRADE methodologist; (3) funding appears to be available for guidelines task forces (costs of face to face meetings if needed, for fellowships for younger task force participants, for guideline GRADE methodologists).
7) EURO-NMD. EURO-NMD is the European Reference Networks for Rare Disorders (ERN) which has been approved by the EU for neuromuscular disorders. It is important that the EAN is in close connection with the EURO-NMD, including the guidelines process. However, only a minority of the panel members are also members of the ERN.
8) Scales, reviews to be indicated – updates. It was reminded that the panel is expected to provide a list of clinical scales used for peripheral neuropathies and a list of good reviews. These are important for the education of registrars and can be uploaded in the EAN pages or on the website. Collaboration with EURO-NMD In this respect will be very important.
9) Interaction with the Advocacy Groups (EFNA, others). Criteria for advocacy groups as part of the EAN scientific panels are stringent. These apply to patient associations not part of EFNA and include the following: Be a European registered association, Work to an agreed Memorandum & Articles of an Association, Have an Elected Board (numbers determined by the Memorandum & Articles of Association), which is published, Have a published Medical Advisory Board, Hold a Bank Account and produce annual audited accounts, Hold an annual General Assembly, Ensure transparency with regard to all funding and support received. We will approach the GBS/CIDP Foundation International’s vice-president for international affairs, Patricia Blomkwist, who has been part of numerous workshops and meetings with regard to inflammatory neuropathies since several years, to see whether this organisation fulfils criteria (e.g., European chapter). Other patient organisations in the neuropathy field (e.g., amyloid, CMT) will be screened/approached.
10) Representative of Resident and Research Fellow Section (RRFS). Dr Adriana-Elena Grigore, from Romania, is the new RRFS representative. The panel welcome her who participated in the meeting.
11) Other topics. The important role of the EAN Spring School of the Czech Republic was underlined. Vitalie Lisnic announced that there will soon be an Autumn School to be held yearly in Greece. National societies have been invited to have an “EAN day” during their national congresses and some of them have already taken place or been planned.
12) Election next year – volunteers to enter the panel’s management group. Next year there will be elections of panels’ co-chairs and Management Group members. DP and PVdB invited interested people to be candidate as it is important that the panel works well. It is important to have a larger Management Group and participation from young members is particularly solicited.
by Davide Pareyson,1 and Peter Van den Bergh2
1Department of Clinical Neurosciences, IRCCS Foundation, C.Besta Neurological Institute, Milan, Italy.
2Neuromuscular Reference Centre UCL St-Luc, University Hospitals St-Luc, Brussels, Belgium