Observational Studies | ALS Center of Excellence


What are observational studies?

Observational studies are a form of clinical research designed to study and better understand disease risk factors or its natural history. There are three types of participants for these studies, using ALS as an example: individuals with ALS, individuals at risk for developing ALS, and healthy individuals acting as a control population. Control participation is extremely valuable in helping to understand the disease better. During an observational study, participants provide information via questionnaires or surveys, biosamples (such as blood and urine), or imaging data. This data helps answer questions posed by the researchers.  

Why observational studies and ALS?

Observational studies are extremely important for helping researchers better understand the risk factors for a disease and learn about strategies to reduce the likelihood of someone developing a disease or finding new treatment targets. These studies can also help to investigate the natural history of disease so that researchers can better understand it.

Current Studies:

Two studies are underway to understand more which environmental and occupational exposures relate to ALS.

  • Epidemiologic Risk Factors and the Genetics of ALS
  • Monitoring Environmental Exposures to Understand Risk of ALS in Michigan

Our largest initiative is two prospective studies that will follow individuals with ALS risk factors over 20 to 30 years.  These studies will take a variety of measures at various time points during the study.