On Tuesday December 8th, a virtual ENCALS satellite meeting was held prior the 31st International Symposium on ALS/MND on 9-11 December 2020. The goal was to discuss international collaborations, SOPs and translation of new developments to the clinic.
Professor Leonard van den Berg, ENCALS Chairman kicked off the online ENCALS satellite meeting with nearly 200 participants. A brief overview of the recent developments of the ENCALS network was given by Professor Van den Berg, including the initiation of the Treatment Research Initiative to Cure ALS (TRICALS), the expansion of the network to over 65 sites and the initiation of several investigator-initiated trials.
ENCALS Young Investigator Award 2020
As the live ENCALS meeting in June had to be cancelled, the ENCALS Young Investigator Award 2020 was given virtually during the meeting. Professor Ammar Al-Chalabi, Chair of the ENCALS Award Committee, congratulated Dr. Tatyana Shelkovnikova from Cardiff University with the award for her research on RNA metabolism in ALS and related diseases.
Thanks to all presenters
Professor Orla Hardiman provided an overview of the TRICALS ICT Platform that aims to serve as digital umbrella linking all ENCALS registered sites to contribute to a pan-European ALS registry that combines all available data ever collected from patients. The TRICALS ICT Platform could be the next step in deep-phenotyping ALS subgroups, identifying the best treatment options, enhancing clinical trials globally and providing a harmonizing framework for all stakeholders. Closely related was the talk by dr. Julian Grosskreutz revealing how predictive modelling strategies, such as the D50 model, could help to classify patients in terms of disease aggressiveness or staging based on advanced biometric data obtained from wet biomarkers, imaging or electrophysiology.
During the COVID epidemic, clinical research in ALS had come to a hold. Not only are patients living with ALS a high-risk group, also some of the vital clinical measurements such as spirometry were impossible to obtain. Professor Adriano Chio provided insights how markers in the blood could reveal reliable insights in the respiratory function of patients. Especially when routine spirometry cannot be conducted, the blood gas analysis could serve as a proxy and can be easily obtained.
Interactive discussion on paediatric ALS
At last, there was a lively discussion about the need for pharmaceutical companies to conduct clinical trials in peadiatric ALS (i.e. ALS before the age of 18) led by TRICALS researcher Tessa Kliest. TRICALS investigated the possibilities and requirements to conduct peadiatric trials in these populations and summarize the overall opinion among European investigators. The results will be published soon as ENCALS collaborative work in a peer-reviewed journal.
The meeting was ended by Evy Reviers from EUpALS, shortly summarizing its major achievements over the last year and their involvement in making clinical research more patient-friendly.
Thank you for joining!
The ENCALS Executive Board would like to give thanks to all the presenters and virtual attendees.
Hope to see you in person next year!