The International Inflammatory Neuropathy
Consortium
The
International Inflammatory Neuropathy Consortium is a Standing Committee of the
Peripheral Nerve Society (http://pns.ucsd.edu/). 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
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.
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