The Acti-ALS study is an academic study initiated by the NMRC (Neuro Muscular Reference Centre) in Liège. Three other centres have also been invited to participate, including UZ Leuven.

ActiALS is a study whose main objective is to identify and validate a digital measuring instrument, called Actimyo or Syde, for monitoring movement in patients with Amyotrophic Lateral Sclerosis.

The study consists of five evaluations, namely at baseline, 3 months, 6 months, 9 months and 12 months.

The continuous ActiMyo® or Syde® measurements are compared with validated motor scale and clinical test data.

Your daily activity will be measured by wearing these Actimyo/Syde devices for 1 month after each hospital visit.

These devices are worn on the wrist and ankle and look like watches. These sensors do not record any personal data.

During the clinic visits, measurements of your strength and motor functions will also be taken. These are tests that are routinely performed in clinical practice and have been validated for patient follow-up.

These tests, ALSFRS-R, lung function, 6-minute walk test, MRC score and Ashworth score, are performed every 3 months, and an evaluation of your cognitive abilities is performed every 6 months.

There are no costs associated with participating in the study.

The study has been approved by the Ethics Committee of UZ Leuven.

Sixty patients can participate in this study, spread across the four centres.