International Consortium on Amyotrophic Lateral Sclerosis Genetics (ALSGEN)

Amyotrophic Lateral Sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease for which there is no cure. There are three classifications of ALS: Sporadic, Familial and Guamanian. At present, there is no identified cause of ALS and it strikes without prejudice to race, ethnicity or socioeconomic status.

To this end, the International Consortium on the Genetics of Amyotrophic Lateral Sclerosis (ALS) was formed in 2008 and is composed of ALS researchers who have agreed to pool their knowledge and resources to search for genes that predispose individuals to ALS. Currently, 13 cohorts have been contributed to a genome-wide association meta-analysis for association with ALS and age of ALS onset. Analyses are being completed by Dr. Carl Langefeld at Wake Forest University; which will serve as the centralized data analysis center. The contributing groups include: Dr. Teepu Siddique with the Feinberg School of Medicine, Northwestern University; Dr. Robert Brown with the Cecil B. Day Laboratory for Neuromuscular Research, Harvard Medical School, Massachusetts General Hospital; Dr. Bryan Traynor with the Section on Developmental Genetic Epidemiology, National Institute of Mental Health; Dr. Leonard van den Berg, with the University Medical Centre, Utrecht, The Netherlands; Dr. Orla Hardiman with the Royal College of Surgeons in Ireland, Beaumont Hospital; and Dr. Ammar Al-Chalabi with King's College London.

The ALS Association provided funding for this project ( Currently, approximately 4,243 ALS patients (cases) are being compared to 5,112 non-ALS patients (controls) for differences in genetic markers across the genome. This effort has identified a locus on 1q34.1 that leads to a 2.5 year earlier age of ALS onset (see publications page). Although a delay of symptom onset of 2.5 years is not large in absolute terms, it is highly significant in the context of ALS where it is comparable to the median survival time once diagnosed with ALS. In addition, the study provided corroborating evidence for some hypothesized ALS-predisposing loci and identified new loci that merit further investigation. This project has launched a new era in the search for genes in ALS and will set the stage for future cooperative efforts.

Members of the ALSGEN include:

  • Dr. Ammar Al-Chalabi, King's College London
  • Dr. Robert Brown, Harvard Medical School
  • Dr. Lucie Bruijn, ALS Association
  • Dr. Carl D. Langefeld, Wake Forest University (Director)
  • Dr. Teepu Siddique, Northwestern University
  • Dr. Bryan Traynor, National Institutes of Health
  • Dr. Leonard van den Berg, University Medical Centre Utrecht, The Netherlands
  • Dr. Orla Hardiman, Royal College of Surgeons in Ireland

ALS Association Logo

This project has been graciously
funded by the ALS Association