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