The ENCALS satellite meeting prior to the 26th International ALS/MND Symposium in Orlando was attended by more than 80 researchers.
The ENCALS satellite meeting provided an overview of the main European collaborative projects in ALS research. Prof. Leonard van den Berg gave an update on SOPHIA. In this early European collaborative project European ALS Centres developed several SOPs to collect data in the same way to be able to share data and increase power of analyses. This resulted in a minimal clinical dataset and harmonization of data collection procedures. Also, centres started to store data in Progeny, the database system that is also central in EuroMOTOR and Project MinE. Within Progeny it is easy to share data for analyses with patients of several European ALS centres.
The meeting was continued with a presentation from Anna Kulka about the progress within STRENGTH. STRENGTH consortium partners have DNA, exposure information and clinical data from people with ALS enrolled in pan-european population registers covering about 120 million people.
Prof. Jan Veldink presented about Project MinE the largest genetic ALS research ever. Researchers in 16 countries collaborate to have 22,500 DNA profiles sequenced (whole genome sequencing). Also, prof. Orla Hardiman provided an update on ALS CarE, comparing care systems and patients’ and care givers’ quality of life in several European countries.
Finally, dr. Christoph Neuwirth presented about MUNIX, a method for Motor Unit Number Index measurements. By measuring the number of functioning motorneurons MUNIX can detect disease progression before patient presents at the clinic with symptoms of further disease progression.
SOPs of European projects
More ALS centres working with the standard operation procedures and with the minimal clinical dataset means more opportunities for datasharing and more power for your statistical analyses. Data sharing agreements are available for centres to share their data for certain projects or papers. All Standard Operating Procedures (SOPs) of the European projects are available on https://www.encals.eu/page/european-collaborative-projects/.
Please contact info@encals.eu for more information about joining a European ALS project and datasharing.
26th ALS/MND symposium
The ENCALS satellite meeting preceeded the 26th ALS/MND symposium. More than 800 researchers worldwide attended this conference in Orlando. All abstracts from the presentations are freely accessible online: 