What are observational studies?

Observational studies are a form of clinical[SG1]  research designed to study and better understand disease risk factors or a disease’s natural history, or other clinical impacts of the disease. In observational studies, participants may provide information via questionnaires or surveys, bio samples (such as blood and urine), or imaging data. Additionally, clinical data may be captured to understand associations with disease. These data help answer questions posed by the researchers. Participation in these studies is extremely valuable for researchers and the ALS community to improve disease insights. As ALS is a highly variable disease, it is helpful for people from all differ socioeconomic and racial backgrounds to participate. This ensures the finding are more generalizable, or in other words, applicable to all groups of people. Participation is also possible for individuals without ALS or for people with a family member with ALS. Knowledge gained from comparing persons with to those without ALS is important for identifying risk factors.

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:

One of our major goals is to understand genetic and non-genetic risk factors and how they interact to alter ALS risk or change its progression. We believe this research is critical to find new treatment targets and prevention strategies.

We enroll participants with ALS, healthy controls, and those with a family history of ALS into our ALS epidemiologic study and biorepository.

• 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.

• Mi-BRAIN (Michigan Brain, Health & Environment Study) is occupationally driven and studies people in production jobs or exposed to metals, which we have already found to increase ALS risk. Please click this link for those interested in learning more about this study.
• EXPOSE-ALS (EXposure and PhenOtyping Study Examining ALS) follows people with a family history of ALS.  Please click this link for those interested in learning more about this study.