Newsletter July 2021!

The ENMC staff has not been idle over the past six months. We are proud to have hosted quite a number of virtual workshops in preparation of the face-to-face workshops, which were postponed to the fall of this year or even to 2022. In December, the ENMC Mid-Career Mentoring Programme was launched and we are happy to see that both mentors and mentee candidates are excited about this ambitious programme. We also launched an additional new type of ENMC workshops: Themed Workshops. You have been able to read about this new initiative in the June Newsflash, but please find more information in the July 2021 Newsletter.

Covid-19 has had a huge impact on our life over the last year but the vaccination levels are rising and we have good hopes that we can leave this pandemic soon behind us. Countries are slowly opening up and travel will be possible again. ENMC hopes to welcome many of you again this year in the Courtyard Marriot Hotel in Hoofddorp or in the new back-up hotel The Element in Amstelveen, The Netherlands. In addition, we keep online facilities open for those of you who cannot travel yet to the Netherlands.
The holidays are coming closer and we wish you all a warm, relaxing summer.

NEW: Themed workshop applications!

In addition to the regular ENMC workshop applications (next deadline is 1 September 2021!) where topics of the workshops originate from the workshop organisers, the ENMC is proud to announce the new concept of “Themed Workshops”. For this type of workshops, the ENMC will identify special themes which are prioritised by the needs of the neuromuscular patient and research community (see Addendum for Themed Call) and which are transversal, multidisciplinary, unique and sustainable.

Themed workshop applications in 2021 (submission deadline is 30 September 2021!)

The proposal for the theme of 2021, taking into account the above criteria, the high importance and urgency of the topic for the neuromuscular patients, is:

 

Post-Covid-19:

Issues and opportunities for the neuromuscular field

Learning experiences from the Covid-19 pandemic regarding neurological, psychological, immunological, social, economic, technical etc. aspects for neuromuscular patients in self-isolation and SARS-CoV2-virus infected people who developed neuromuscular symptoms.

 

The rationale for selecting this workshop theme this year is to learn from the Covid-19 pandemic and the way NMD patients were assessed and care managed during the self-isolation period. For example to learn from novel monitoring techniques, which were implemented during the current pandemic out of necessity, and adopt them for the regular care management of NMD patients in the future. But also to understand how neuromuscular signs and symptoms have developed in non-NMD patients who were infected by the Corona virus.

This Post-Covid-19 theme adheres to the requirements for the Themed Workshops since it:

  • is preferably of interest for several neuromuscular conditions and if relevant even require sharing experience outside the neuromuscular field (transversal workshops).
  • require a multidisciplinary approach, i.e. a heterogenous group of participants, such as clinicians, health care professionals, basic scientists, patient and pharma representatives, technical experts and external specialists etc. need to take part in the discussions.
  • are topics and/or diseases that are not often discussed in a workshop, that are unique in the sense that the theme is of added value for the neuromuscular community and that there is no duplication of efforts.
  • are groundbreaking and strategic and require therefore development of a sustainable platform or consortium in the future.

 

Call for Applications!

Organisers, who would like to pick up this theme and apply for an ENMC workshop, are free to further define the rationale, background, objectives and resulting deliverables of the workshop, according to the regular Grant Application Guidelines and its Addendum regarding Themed Calls (Step 2: Application guidelines – ENMC).  Some workshop questions were suggested by the ENMC Research and Executive Committee, which are not mandatory to include in the applications, but perhaps are a source for inspiration:

  • Can we use the workshop platform to give an overview of the development of the WMS guidelines on Covid-19 management and vaccination of patients affected by a neuromuscular condition (NMD)?
  • What can the NMD field bring to non-NMD patients affected by Covid-19, who have developed neuromuscular signs and symptoms? Definition of possible projects involving these Covid-19 patients and funding opportunities.
  • What can we learn from telemedicine (e-health) alternative ways of monitoring NMD patients during self-isolation and/or in clinical trials?
  • Can we formulate guidelines on psychological and physical exercise support for NMD patients who are or have been on strict self-isolation during the Covid-19 pandemic?
  • Can this workshop be a starting point for the establishment of a “Post-Covid-19 consortium”, which will continue work on this topic and e.g. start a registry of patients affected by NMD in future Corona endemics?

Application selection criteria for Themed workshops:

  • Same guidelines as for the regular open call.
  • Due to the transversal and multidisciplinary character of the themed workshops, the number of participants may reach a maximum of 30 persons.
  • Due to the multidisciplinary character and the broad impact of themed workshops, applicants are encouraged to disseminate their results through multiple channels and papers.

Timeline (for the first Themed Workshop Call in 2021):

June 2021: call opening

30 September 2021: deadline for submission of workshop applications. In case you have questions, please contact the office at least two weeks before the deadline

October 2021: review and rating of the received themed workshop applications by the ENMC Research Committee, separately from the review of the open call applications

November 2021: selection of one themed workshop application by the ENMC Executive Committee. If two applications are complementary and may well integrate with each other, ENMC may accept to organise both workshops or merge them into one workshop

December 2021: Communication of the decision by the ENMC office

Following year: Execution of the themed call workshop(s) in a face to face setting in 2022

Updated application guidelines

Since the beginning of the pandemic ENMC has hosted virtual meetings in preparation of the face-to-face workshops that were postponed due to Covid-19. We have updated our application guidelines with guidelines for virtual meetings. You can find the updated guidelines here: https://www.enmc.org/workshops/how-to-apply/step-2-application-guidelines/

ENMC travel preferences to contribute to reductions in CO2 emissions

ENMC’s contribution to reduce CO2 emissions

ENMC brings on average 250-300 persons per year from all over the world to The Netherlands. This number mostly comprises participants of ENMC workshops; e.g. in 2019 we hosted 250 workshop participants at our hotel venue in Hoofddorp. But also members of the Research and Executive Committee fly in for the bi-annual ENMC board meetings. Most people travel by airplane (70-80%), the rest travels by car and by train. Plane travel and car journeys are particularly impactful on the climate1, hence we felt it is time to take our responsibility as organisation and try to help reducing global warming, even if it is a small portion. The high level of CO2 emissions are a cross-border problem and requires a European approach.

 

ENMC prefers travel by train

As of January 1, 2021, ENMC encourages that workshop participants and members of the ENMC Committees take the train instead of a plane. This may e.g. be applicable for people who can reach the meeting destination near Amsterdam within a total of eight (8) hours of travel time. We understand that people may require taking a plane because of personal, geographical or work-related reasons; it is not always convenient anytime for everyone. Therefore, this train preference is not mandatory and hence ENMC is not withdrawing its reimbursement policy for plane or car travel.

 

European guests coming from ENMC countries

Within Europe, travelling by train is becoming more the gold standard, even more so since the start of the Covid-19 pandemic and the subsequent flying restrictions. Therefore, it is now the right moment to encourage our European guests to take the train instead of a plane. The ENMC will cover the train tickets for persons coming from our member countries (UK, NL, Germany, France, Italy, Denmark, Finland, Austria, Switzerland). Although the train takes longer than a flight, it saves waiting and check-in time at airports and it may provide precious workhours. If booked at an early stage, 1st class (or Standard Premier) tickets can be just as economical as the 2nd class (or standard) ticket. To encourage train usage, ENMC will additionally cover: 1) 1st class (or standard premier) train tickets if booked in advance at a reasonable rate (< 300 euro), 2) cancellation fees for train tickets bought ahead of time and 3) one overnight stay due to the longer train trip or inconvenient travel times. In this case, the hotel will be booked by ENMC.

 

European guests from non-ENMC countries.

European guests not from ENMC member countries, are also strongly encouraged to prioritise travelling by train to take climate responsibility. ENMC will encourage the co-sponsors to cover additional costs due to train travel in line with the above-mentioned ENMC’s reimbursement policy for participants from ENMC member countries.

 

Guests from outside Europe

It is clear that participants from outside of Europe cannot take trains for their entire journey. However, if they are combining their participation in an ENMC meeting as part of a longer trip to Europe, they may wish to consider travelling within Europe by train. Physical presence at a meeting should only be considered if it is mandatory for the meeting’s success, e.g. because the person is one of the workshop organisers or has a presentation and/or contribution which is key to the outcome of the workshop. ENMC has recently set up hybrid meeting facilities, which makes it possible for people coming from these areas to attend (parts of) the meeting online. For persons coming from outside of Europe, but within train distance from the Netherlands (e.g. Eastern part of Russia), ENMC encourages train travel to The Netherlands.

Job vacancies at the ENMC!

At this moment we have no vacancies at ENMC

 

Next workshop application deadline: 1 September 2021

ENMC workshop applications can be submitted the whole year through, however we have scheduled only two review moments per year: one in the spring and one in the autumn. The next deadline for sending in applications for workshops is:

1 September 2021

 

The forms to be completed for a workshop application can be downloaded here.

Incomplete applications will not be processed. If you want the office to preview your application on completeness and accurateness, please submit your application anytime but at least 2 weeks before the submission deadline. Applications submitted after the deadline will be processed in the following review round.

Covid-19 and people with neuromuscular disorders

28 March 2020

The World Muscle Society Position and Advice for managing COVID-19 in people affected by neuromuscular conditions

Dr. Maxwell Damian together with more than 80 specialists in the field collated the WMS Covid-19 advice for neuromuscular patients, carers, general neurologists and non-specialist medical providers. This advice is also intended to inform neuromuscular specialists particularly regarding frequently asked questions and basic service requirements. 

The latest version 5 (December 23, 2020) of the WMS Covid-19 advice on Vaccines can be downloaded here

History of versions:

Version 1 – WMS Covid-19 advice 28-03-2020

Version 2 – Update 02-04-2020

Version 3 – Update 20-04-2020

Version 4 – Update and Deconfinement 10-05-2020

Version 5 – WMS vaccines document 28-02-2021

The advice is endorsed by the Members of the Board of the WMS (www.worldmusclesociety.org), colleagues from the Editorial Board of Neuromuscular Disorders, the official journal of the WMS, EAN Scientific Panel Muscle & NMJ disorders, ERN EURO-NMD, Treat-NMD and ENMC.

Translations:

Arabic by Rasha el Sherif
Czech by Jana Haberlova
Chinese (Traditional) by Wen-Chen Liang
Dutch by Peter van den Bergh and Nathalie Goemans
French by Shahram Attarian
German by Benedikt Schoser (here also the link to the: Nichtinvasive Heimbeatmung NME Deutsch WMS recommendation + COVID-19 WMS Empfehlungen Update 10-MAY-2020 and the WMS Empfehlung Corona-Impfstoffe 23-12-2020, WMS-COVID19 Vaccine Impfempfehlungen 28Februar2021)
Hungarian by Rita Horvath
Indonesian Luh Ari Indrawati
Italian by Antonio Toscano (here also the link to the: 27-04-2020 WMS Covid-19 document Updated Italian version)
Japanese by Madoka Mori-Yoshimura, Wakako Yoshioka, Ichizo Nishino
Korean by Jongmok Lee
Malay by Khean-Jin  Goh
Polish by Anna Kostera-Pruszczyk
Portuguese by Teresina Evangelista
Portugese (Brazil) by Mariz Vainzof (here also the link to the: WMS vaccines document Portugues -final)
Spanish by Montse Olivé
Swedish by Mar Tulinius and Anders Oldfors
Turkish by Haluk Topaloglu

For new updates and amendments of the Covid-19 advice and subsequent translations; click here

Also please see a directory of guidelines / information resources relating to neurological disorders as posted on the EPNS website. There is useful information also for NMD patients.

From Joshua Benditt MD, Medical Director of Respiratory Care Services and General Pulmonary Clinic in Seattle, USA, we received a COVID-19 Plan and Preparation Guide for Adults with NMD put out by one of the NMD United patient groups and designed for patients as to best practices to stay safe in the current situation.

 

For some of the sections, amendments were made: Update 02-04-2020 to WMS advice Covid-19.

ENMC White Paper

On Rare Disease Day 2020, the outcomes and consensus from the ENMC workshop on “The position of the neuromuscular patient in shared decision making” are now published in a WhitePaper. The workshop participants represented a wide range of stakeholders from 15 different countries: patients and parents, representatives from neuromuscular diseases organisations, clinicians, health care professionals, researchers, societal and policy researchers, psychologists, ethicists, representatives from regulatory authorities and pharmaceutical companies. The White Paper is based on the outcome of the workgroup discussions (published by Lochmuller et al, 2019 and Ambrosini et al, 2019) and, in particular, it reports the consensus reached on specific recommendations for patient organizations and health care professionals, together with key examples analysed during the meeting.

It is a call to action to all stakeholders to become ambassadors and promote the direct involvement of people living with a neuromuscular disease in all aspects of health care and medicine development related to their disease. 

The workshop took place in Milan, Italy in 2018 and was attended by 45 participants from 15 different countries.

 

The 2nd report of the special ENMC workshop on the role of the neuromuscular patient in Shared-Decision-Making!

 

Ambrosini et al. Orphanet Journal of Rare Diseases (2019) 14:126

 

ENMC bibliometric report published

The CWTS bibliometric report on ENMC workshop derived publications is now available.