FSHD European Trial Network (FSHD ETN) Newsletter 2 – January 2022

FSHD European Trial Network

The FSHD ETN wishes you a very healthy and inspiring 2022! We are very pleased with the steps taken and look forward to strengthen our collaboration in 2022!

We here give you a short update on our activities and plans

• The workshop report (April and May 2021) has been published by Neuromuscular disorders; thanks to all your rapid contributions! 1st FSHD European Trial Network workshop: Working towards trial readiness across Europe. Voermans NC, Vriens-Munoz Bravo M, Padberg GW, Laforêt P; FSHD European Trial Network workshop study group.Voermans NC, et al. Neuromuscul Disord. 2021 Sep;31(9):907-918.
• The application to ENMC for the workshop “Muscle Imaging in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials” by Giorgio Tasca, Sharham Attarian, John Vissing and Jordi Díaz Manera has been approved by ENMC and is planned to take place 22 – 24 April 2022.
• The application to ENMC for the second workshop “Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials” by Richard Lemmers, Federica Montagnese, Julie Dumonceaux and Nicol Voermans has been prepared and will be submitted to the ENMC RC in February 2022.
• The working groups in these two ENMC workshops will orient themselves on the opportunities to submit grant proposals together (prepare in 2022; apply in 2023):
  • EJP RD:
    https://www.ejprarediseases.org/joint-transnational-call-2022/
  • AFM (PS Good result of Telethon)
    Scientific: http://www.afm-telethon.com/media/files/SCIENTIFIC%20CALL%20FOR%20PROPOSALS%20AFM-TELETHON%202022.pdf
    Medical: http://www.afm-telethon.com/media/files/ok-MEDICAL%20RESEARCH%20CALL%20FOR%20PROPOSALS%20AFM-TELETHON%202022.pdf
  • https://www.fshdsociety.org/
• The Communication team of FSHD Europe / FSHD ETN is continuously working to improve the quality of the website. You can contact Bine Haase with any comments or suggestions: bine@fshd-europe.info

• We aim to have open membership, including active and associate members. You might be contacted by clinicians or researchers in your country. You can refer them to Nicol Voermans.
• Enrico Bugiardini (UK) and Valeria Sansone co-chair the FSHD Taskforce in TREAT NMD. TREAT-NMD is focusing on the harmonisation of registries worldwide, in assessing the available FSHD diagnostic and therapeutic services, in extending the network of experts and on training for professionals.
  For training, TREAT-NMD aims to collaborate with the FSHD Society who has organized a masterclass:
  https://www.fshdmeetings.org/c/express/908f977c-b3c1-41e7-aeb3-47a08e8b2a45?5S,M3,908f977c-b3c1-41e7-aeb3-47a08e8b2a45=
  You can sign up for the TREAT-NMD newsletter here: https://treat-nmd.org/news-events/newsletter-signup/
• FSHD ETN together with FSHD Society is preparing an update of the international standard of care. This review will be submitted in the second quarter of 2022.
• FSHD Europe has received 40.000 euro from pharmaceutical companies to support the FSHD Patient Survey which will be directed by Megan McNiff (UK) and Jordi Diaz Manera (UK).

Best wishes,
The FSHD ETN Executive committee
Teresinha Evangelista, Pascal Laforêt, Alexander Mejat,
María Vriens – Muñoz Bravo, Valeria Sansone and Nicol Voermans