Peter Van den Bergh (PVdB): Peripheral neuropathies are common neurological disorders. In the annual EAN congresses, they are an important topic which the Scientific Panel Neuropathies strives to integrate in the scientific and in the educational Program. I would like to introduce the Peripheral Nerve Society (PNS) of which you are the president to the EANpages readership. Can you please explain what the PNS stands for and what its objectives and aims are to the readers of the EANpages?
Mary Reilly (MR): The Peripheral Nerve Society (PNS) is an international organisation of physicians and scientists working together to develop and provide the best treatments for people who have peripheral nerve diseases. The Society was formed in 1994 and was an amalgamation of two Societies – the Peripheral Neuropathy Association and the Peripheral Nerve Study Group. The Peripheral Nerve Society has grown and currently has more than 500 members from all over the world. A major activity of the PNS is its meeting, which used to happen every second year, but from 2017 it will be every year. This meeting provides state of the art talks and education in all peripheral neuropathies and novel therapy developments. The PNS is also committed to education and runs teaching courses, joint workshops and symposia in a variety of meetings including in collaboration with the EAN, but also the AAN, AANEM, ICNMD, and the WFN. Increasingly we are also running smaller workshops in individual countries. We have a keen commitment to encouraging the future involvement of younger members and in the last two years we have formed a junior PNS board which advises the PNS board of all of its activities and also organises the teaching course of the PNS which occurs the day before the main meeting. The PNS is the natural home for anybody who is interested in peripheral nerve diseases from basic science right through to treating patients.
The upcoming meeting for 2017 of the PNS will be in Sitges, Spain, from the 8-12th July 2017.
PVdB: Peripheral neuropathies represent a wide spectrum of disorders both acquired and hereditary. Can you give an insight in how the PNS is organised to cover the various aspects of the peripheral neuropathy field?
MR: Peripheral neuropathies represent a very wide spectrum of disorders and we have been very keen in the PNS to be comprehensive in covering peripheral neuropathy. The Core Meeting is a 3½ day meeting covering all neuropathies, but in view of the increasing exciting diagnostic and therapeutic developments of inflammatory and inherited neuropathies, there are now two consortia within the PNS: the Inflammatory Neuropathy Consortium (INC) and the Charcot-Marie-Tooth disease and related neuropathy consortium (CMTR) which will have dedicated sessions in the PNS 2017 meeting. Also for the first time in 2017 there will be an afternoon symposium dedicated to diabetes. Therefore, the PNS covers not only the whole spectrum of peripheral neuropathies but also appreciates how important basic science research is to the understanding of peripheral nerve diseases and always includes basic science talks in its plenary sessions. In our Education Committee we also have a sub-committee for basic science meetings so that we run symposia on peripheral nerve diseases in basic science meetings as well as in clinical meetings.
PVdB: The etiology and pathophysiology of peripheral nerve disorders are very diverse and the perception still prevails that often no cure or treatment exists. What is your view on this and on the future perspectives for treatment?
MR: Historically many peripheral nerve diseases were deemed be untreatable, but I am very pleased that this is now gradually changing. In the last two decades there has been an increasingly number of successful treatments available for the inflammatory neuropathies including Guillan-Barré syndrome (GBS), chronic inflammatory demyelinating polyradiculopathy (CIDP) and the vasculitic neuropathies. As such, diagnosis and management of these conditions has become a very important part of the peripheral neuropathy specialist work. New treatments for amyloidosis, lymphoma and POEM’s disease in the last 5-6 years have also made the diagnosis of these conditions extremely important to be made by the peripheral nerve specialist. An exciting current area is the development of therapies for inherited neuropathies. The trials of gene silencing therapies for TTR related Familial Amyloid Polyneuropathy (FAP) are due to be presented this year and there are many small molecules and gene editing therapies in development for other inherited neuropathies. This has meant that the area of peripheral neuropathies has been a rapidly evolving area with emphasis on early diagnosis to allow for early therapy. I see this as developing in the future so that there are increasingly personalised treatments for both the inflammatory and the inherited neuropathies.
PVdB: The PNS is a world-wide international organisation which holds its congresses in North America and in Europe. We have been discussing the possibilities of collaboration with the EAN as you well know. Several members of the PNS are also members of the EAN Scientific Neuropathy Panel and we already collaborate in putting together the scientific and educational programme since many years. How do you see the perspectives for even closer collaboration between the PNS and the EAN?
MR: I see the collaboration between the PNS and the EAN as an exciting opportunity to develop further. We have had very successful previous collaborations between the PNS and EFNS which have resulted in development of guidelines for a number of diseases including CIDP which are extremely useful and widely used. As you know we are in the early stages of developing the first joint PNS /EAN guidelines which would be for GBS, and the PNS is very excited about this.
Again, following previous collaborations particularly between the PNS and the EFNS, we are also collaborating with the EAN in developing scientific and educational programmes, and are very keen to continue to do this.
As you say, many of our European members are members of both the PNS and the EAN, and there is a will to have a closer collaboration. I would see that in the future this collaboration could evolve to encompass the development of registries, databases, collaboration in national history studies, clinical trials and joint funding of fellowships. We are very committed to improve the health of patients in developing countries with peripheral neuropathy through education and training of neurologists, and I would see a potential opportunity for the PNS and EAN to collaborate and deliver this mission.
PVdB: A new initiative are the European Reference Networks (ERNs) for Rare Disorders, which aim to facilitate and coordinate care of patients with rare disorders across Europe. Euro-NMD is the ERN for neuromuscular disorders, which has been created earlier this year. Since peripheral neuropathies are an integral part of the network and you are coordinating the peripheral neuropathies specialist group, what are the implications for the PNS according to you?
MR: Development of the Euro-NMD as our European reference network for rare diseases has been a very exciting development and I am pleased to be co-ordinating the peripheral neuropathy specialist group within this. A very laudable main aim of the ERN is to allow all patients in Europe availing of the same opportunities for diagnosis and treatment of their rare disease wherever they live. Through this we not only need to develop guidelines of what is the best care for peripheral neuropathies, but also know the detail of the expertise which is available in individual countries. We then need to develop models of how patients access this, mainly in a virtual environment, but in a system which has an excellent governance structure. I hope very much that the Euro-NMD is successful in this mission, and if it is then I would see this as a system which could be expanded worldwide to improve the diagnosis and treatment of peripheral neuropathies and other rare diseases. It would seem to me that the Euro-NMD, EAN and PNS could work together and make this reality.
PVdB: Soon the European Neuromuscular Centre (ENMC), which organises many workshops on a yearly basis, will celebrate its 25th birthday. This year alone already 2 workshops have dealt with peripheral neuropathies. Can you tell the EANpages readers how you see the ENMC as an instrument for advancing research and treatment of peripheral neuropathies?
MR: The European Neuromuscular Centre (ENMC) is a fantastic organisation for advancing research for the treatment of peripheral neuropathy. Over the last 25 years there has been multiple workshops which have revolutionised the treatment of diseases from developing guidelines to agreeing details of actual treatments in the inflammatory and inherited neuropathies. In my own area of research in inherited neuropathies the ENMC was instrumental over the last two decades in funding and running focused workshops for us all to bring very well phenotyped families together to help combine these families for linkage studies and eventual identification of genes. More recently the ENMC has allowed us to develop agreed outcome measures for clinical trials in the inherited neuropathies, but also in many other neuropathies and to agree standards of care. I think that the ENMC has been one of the great European successes over the last 25 years and it has always had an open door policy of having non-Europeans involved who bring in expertise internationally. Going forward I would like to see the ENMC enlarge and include countries outside Europe more formally to help both fund it and allow greater international participation in these workshops. The impact of these workshops over the last 25 years has been enormous.
PVdB: How do you see the future of the PNS with regard to research and development of diagnostic tools and treatment of hereditary and acquired neuropathies?
MR: I see the role of the PNS as being pivotal with regards to the development of research and the development of diagnostic tools and treatment in all kinds of neuropathies in the future. There are many different types of societies and very many different types of meetings that we all go to. These vary from excellent meetings covering a wide spectrum of neurological diseases, like the EAN, to very focused workshops with 20 to 30 people looking at one aspect of one disease like the ENMC. I have personally noticed in the last decade that the tendency for people is to attend sub-speciality meetings and I appreciate how we all benefit hugely from these. One of the disadvantages of very small sub-speciality meetings is that one may lose the breadth of ideas from other diseases in your area. I think that the PNS has a unique place since it covers the whole of peripheral neuropathies from basic science through to treating all types of neuropathies. At our meetings we aim at having very generalised plenary sessions complimented by several sub-speciality meetings and hence hopefully educating everyone and helping both research and development of the neuropathies.
Professor Reilly I thank you for this very interesting interview and wish you and PNS all the best for the future.
Interview by Peter Van den Bergh, Co-chair of the EAN Scientific Neuropathy Panel