The International Inflammatory Neuropathy Consortium
The International Inflammatory Neuropathy Consortium is a Standing Committee of the Peripheral Nerve Society. Its inaugural meeting took place in April 2007 as the 151st Workshop of the European Neuromuscular Centre (http://www.enmc.org/workshop/?id=72&mid=54).1 The organising committee are neurologists who are committed to improving and advancing the investigation and treatment of inflammatory neuropathies.
The mission of the INC is ‘to improve the care and treatment of patients with inflammatory and immune-mediated neuropathies’. This includes Guillain-Barré Syndrome, chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), multifocal motor neuropathy (MMN) and paraproteinaemic demyelinating neuropathies (PDN). Further details of the aims, objectives and structure of the INC are set out in its constitution (link).
The INC recognises the need for
• better education of health care professionals to enable earlier diagnosis and treatment,
• more research into the pathogenesis of the inflammatory neuropathies,
• more trials of treatment for all forms of inflammatory neuropathy,
• more trials in children with inflammatory neuropathies,
• improved outcome measures,
• treatments for symptoms of particular concern to patients, such as fatigue and pain, and
• a strategy for prioritising and undertaking trials of candidate treatments efficiently.
Membership
Membership of the Consortium is open to any member of the Peripheral Nerve Society who is engaged in research into the cause or treatment of inflammatory or immune-mediated diseases of the peripheral nervous system. Interested individuals should apply to the Secretary of the Organising Committee (see contact details below).
Meetings
13 to 15 April 2007. European Neuromuscular Centre, Hoofddorp, The Netherlands Inaugural meeting of the Organising Committee1. http://www.ncbi.nlm.nih.gov/pubmed
16th July 2007. Peripheral Nerve Society, Snowbird, Utah
Open Meeting of Committee and members
4th to 6th July 2008 Open Scientific Meeting of the Inflammatory Neuropathy Consortium (INC) of the Peripheral Nerve Society. Amphithéâtre Babinski, Hôpital de la Salpêtrière, Paris, France. A report of this meeting can be found here here.
Future Meetings
Würzburg PNS meeting July 4th-8th 2009 - A meeting of the INC will take place during this event in addition to the session dedicated to inflammatory neuropathies. Check http://www.pnsociety.com for details.
Uluru, Alice Springs, Austrailia 3rd week of May 2010 – A 3 day meeting is planned for 2010 in conjunction, and overlapping with the genetic interest group. More details later.
On-going work
Multifocal motor neuropathy database – this is in the final stages of commission and funding.
Erasmus GBS outcome score (EGOS) – further plans for prospective validation of this score are in progress involving a large and statistically relevant number of participants. More news soon.
Platform GBS – a broad range of genetic and biomarker studies is planned by Bart Jacobs with the support of the INC and is at the planning and development stage.
PeriNoms – materials have been distributed and patients are already being recruited.
Rituximab in CIDP – following collection of data from INC members a formal trial of Riuximab in CIDP was supported.
Rituximab in PDPN (RiMAG) – final patients are being recruited during late 2008.
Sodium channel blockade in GBS – preparatory studies are funded and on-going.
Publications
Lunn MP, Léger JM, Merkies IS, Van den Bergh P, van Schaik IN et al..
Workshop Report of 151st ENMC International Workshop: Inflammatory Neuropathy Consortium 13th -15th April 2007 Schiphol, The Netherlands. Neuromuscular Disorders 2008 Jan;18(1):85-9
van Nes SI, Faber CG, Hamers RM, Harschnitz O, Bakkers M, Hermans MC, Meijer RJ, van Doorn PA, Merkies IS; PeriNomS Study Group. Revising two-point discrimination assessment in normal aging and in patients with polyneuropathies. J Neurol Neurosurg Psychiatry. 2008 Jul;79(7):832-4.
van Koningsveld R, Steyerberg EW, Hughes RA, Swan AV, van Doorn PA, Jacobs BC. A clinical prognostic scoring system for Guillain-Barré syndrome. Lancet Neurol. 2007 Jul;6(7):589-94.
Guidelines for Management of Neuropathy
INC members of the Peripheral Nerve Society have recently published three guidelines on the management of chronic inflammatory demyelinating polyradiculoneuropathy, on multifocal motor neuropathy and on paraprotein-associated demyelinating neuropathy in the Journal of the Peripheral Nervous System. These will be periodically reviewed and updated.
Guideline for management of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP).
Guideline for management of multifocal motor neuropathy.
Guideline for management of paraprotein-associated demyelinating neuropathy.
Guidance for preparation of additional management guidelines
Organising Committee
Richard AC Hughes, London UK, Chair
David R Cornblath, MD, Johns Hopkins, Baltimore USA, Vice-Chair
Pieter van Doorn, Erasmus Medical Center, Rotterdam The Netherlands Vice-Chair
Michael PT Lunn, National Hospital for Neurology and Neurosurgery, London UK, Secretary
Hans-Peter Hartung, Heinrich-Heine-Universität, Düsseldorf Germany
Jean-Marc Léger, National Reference Center for Neuromuscular Diseases, University Hospital Pitié-Salpêtrière, Paris France
Richard A Lewis, Wayne State University, Detroit USA
Ingemar SJ Merkies University Hospital, Rotterdam The Netherlands
Eduardo Nobile-Orazio, University of Milan, Milan Italy
Mary M Reilly, National Hospital for Neurology and Neurosurgery, London UK
Leonard H van den Berg University Medical Centre, Utrecht, The Netherlands
Peter Van den Bergh, Centre de Référence Neuromusculaire, Cliniques Universitaires St-Luc, Université Catholique de Louvain, Brussels, Belgium
Ivo van Schaik, Academic Medical Centre, Amsterdam The Netherlands
Contacts
Michael Lunn
INC Secretary
Consultant Neurologist
Centre for Neuromuscular Disease
National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG UK
+44 207 837 3611 x3267
Michael.lunn@uclh.org
