230th ENMC International Workshop: “Improving future assessment and research in
IgM anti-MAG peripheral neuropathy: a consensus collaborative effort”
Translations of the lay report; in French
Date: February 24-26, 2017
City: Naarden, The Netherlands
This workshop took place from February 24th -26th, 2017 in Naarden, The Netherlands. A collaborative group of clinical experts in the field of neuropathy associated with anti-nerve antibodies in the blood (focusing on IgM paraprotein), patients and their representatives met for the 230th ENMC meeting with the purpose of improving the future assessment of patients and research in IgM anti-myelin associated glycoprotein (anti-MAG) peripheral neuropathy. The workshop was conducted under the leadership of Nicolette C. Notermans, Ingemar S.J. Merkies and Michael P.T. Lunn.
The group gathered to address different aspects of the disease. They embraced the principle that specific valid functional outcome measures should be developed for studying and following clinical patients with these conditions.
The IMAGiNe project will collect data to classify patients and understand their natural history, the neurological and haematological characteristics of the disease and treatment responses, both past and future. The project will be inclusive of all worldwide centres with disease expertise, which can include at least 10 participants.
The group will also evaluate current outcome measures and develop a new disability scale or scales with a focus on patients. The outcome measures will represent their impairments, disabilities, quality of life and treatment expectations. Following the development of scales consensus will be reached on defining “being a responder” to treatment.
We will explore new avenues in diagnosis, disease classification, pathogenesis and treatment, collaborating with our haematological colleagues who are essential to this effort. The IMAGiNe project will lead to proposals for new therapeutic strategies, with a plan to commence our first clinical trial utilizing novel outcomes by the end of 2018.
We will review progress annually through the Inflammatory Neuropathy Consortium and Peripheral Nerve Society congresses, and periodically inform the ENMC of the impact and outcomes of our projects.
Prof. Dr. P. van den Bergh (Brussels, Belgium), Mrs. P. Blomkwist-Markens (GBS/CIDP Foundation International, patient representative), Prof. Dr. D. Cornblath (Baltimore, Maryland, USA), Dr. S. D’Sa (London, UK), Prof. Dr. C. Faber (Maastricht, the Netherlands), Dr. S. Goedee (Utrecht, the Netherlands), Prof. Dr. K. Gorson (Boston, Massachusetts, USA), Prof. J-M Léger (Paris, France), Prof. Dr. R. Lewis (Los Angeles, California, USA), Dr. M. Lunn (London, UK), Mr. L. Mazawey (patient), Dr. I. Merkies (Maastricht, the Netherlands), Prof. Dr. E. Nobile-Orazio (Milan, Italy), Dr. N. Notermans (Utrecht, the Netherlands), Dr. L. Padua (Rome, Italy), Dr. L. van der Pol (Utrecht, the Netherlands), Drs. M. Pruppers (Maastricht, the Netherlands), Dr. L. Querol (Barcelona, Spain), Prof. Dr. A. Steck (Lausanne, Switzerland), Prof. Dr. Hugh Willison (Glasgow, UK).
A full report is published in the Neuromuscular Disorders (pdf)