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PYRAMID (Phenotype Research for ALS Modifier Discovery) study

Active and recruiting

Amyotrophic lateral sclerosis is a neurodegenerative condition of the motor system. Due to progressive paralysis the median survival is limited to barely 36 months after the disease’s onset. About 10% of patients suffers from a hereditary form of the disease. For this hereditary form the disease can be explained with about 85% of the patients by mutations in one of the four following genes: C9orf72, SOD1, TARDBP or FUS. For the majority of the patients without positive family history the cause is unknown. There isn’t only a heterogeneity in the causes of the disease, the progression can also differ greatly. Riluzole is the only medicine with a proven advantageous effect on the disease progression. In this study they’ll look for factors that influence the progression, by comparing patients with a fast progression with patients with a slow progression.

New patients with the diagnosis of ALS will be able to participate in this academic study, where on one hand a thorough pheno characterization will be executed (including ALS-FRS, screening for cognitive deviations, quantification of the motor axonal loss with MUNIX, lung function, MRI), and on the other hand bio samples will be collected (DNA, RNA, serum, lumbar fluid). The purpose of the study is creating a detailed databank of clinical information and samples from ALS patients. These will be used to identify the factors that determine the disease progression. The study will be done in UZ Leuven Gasthuisberg led by Prof. Dr. Philip Van Damme. The analysis of the research results will be done in a European context, which is where various other European ALS centers will contribute.

In case you are interested in participating in this study you can get in touch with the study coordinator, Annemie Devroye, 016 347294,


Translation: Sara De Roy