The International Symposium on ALS/MND

The 34th International Symposium on ALS/MND organised by the Motor Neurone Disease Association will take place in Basel, Switzerland next week from the Wednesday the 6th to Friday the 8th of December. Precision ALS will be well-represented at the symposium with a total of one presentation and seven posters representing eight Precision ALS sites! Details of the presentations and posters can be found below.

Precision ALS Extant Data Study

The majority of the Precision ALS research being presented at next week’s conference has stemmed from the Precision ALS extant data study. This study included 21,820 participants from all nine current members of the Precision ALS Consortium. Data from population-based registers were collated to create one large dataset, which could then be used to answer the six questions of the study.

The objectives of this study were to investigate:

  1. The frequency of ALS patients with known gene variants.
  2. Rates of ALS progression as defined by the ALS functional rating scale (ALSFRS-R).
  3. Time taken for various subgroups of ALS patients to reach key clinical milestones.
  4. The proportion of ALS patients availing of Riluzole, and the effect that has on the course of the disease.
  5. Rates of ALS progression as defined by respiratory function.
  6. Current working status of ALS patients and the level of assistance they receive from caregivers.


Presentation: Time-to-event analysis of key clinical milestones

We are particularly excited to hear from Dr Alejandro Caravaca Puchades of Bellvitge University Hospital (Barcelona) and Dr Harry McDonough of the University of Sheffield who will be presenting their time-to-event analysis of key clinical milestones (extant study question 3). Their presentation is titled, “Mapping the natural history of ALS: Time-to-event analysis of clinical milestones in the pan-European, population-based PRECISION-ALS cohort” and will be taking place on Thursday, the 7th of December at 2:00 pm.

Precision ALS Posters

Listed below, are all of the Precision ALS posters that will be presented at the Symposium, as well as their authors and associated institutions:

Precision ALS

Title: PRECISION ALS: A Bespoke Framework for Cross National Prospective Data Collection and Analysis

Author: Prof. Orla Hardiman (Trinity College Dublin)

Extant Question 1

Title: Characterising the amyotrophic lateral sclerosis population in Europe – a clinical observational study of 21,000 patients as part of the PRECISION ALS project

Authors: Dr Sarah Opie Martin (King’s College London), Dr Robert McFarlane (Trinity College Dublin)

Extant Question 2

Title: Analyzing ALS progression: Unveiling rates patterns and variability in the ALSFRS-R using retrospective data from the PRECISION ALS Consortium

Authors: Ms Daphne Weemering (UMC Utrecht), Dr Ruben Van Eijk (UMC Utrecht), Dr Sarah Opie-Martin (King’s College London)

Extant Question 4

Title: Real-world evidence for the effect of riluzole treatment on survival in patients with Amyotrophic Lateral Sclerosis: a retrospective analysis of PRECISION-ALS

Authors: Dr Rosario Vasta (University of Turin), Dr Umberto Manera (University of Turin), Dr Fouke Ombelet (UZ Leuven), Dr Frederik Hobin (UZ Leuven)

Extant Question 5

Title: Respiratory function survival and NIV prevalence over time in ALS – a retrospective study from PRECISION ALS

Author: Dr Stefan Sennfält (Karolinska Institute)

Extant Question 6

Title: PRECISION-ALS: Examining the impact of Amyotrophic Lateral Sclerosis (ALS) on working status and caregiver assistance using population-based European databases

Authors: Dr Robert McFarlane (Trinity College Dublin), Dr Harry McDonough (University of Sheffield)