Ongoing Studies
Identification and Validation of ALS Environmental Risk Factors
The aims of this study are to identify the potential environmental risk factors associated with ALS and better understand the basic biology of ALS with the direct goal of preventing ALS and advancing ALS treatments. Participants in this study complete a comprehensive assessment of environmental risk factors. In addition, many participants choose to provide a sample of blood and small skin sample to help us better understand the causes of ALS.
Related publications:
High plasma concentrations of organic pollutants negatively impact survival in amyotrophic lateral sclerosis
Environmental risk factors and amyotrophic lateral sclerosis: a case-control study of ALS in Michigan
Longitudinal Study of Innate Lymphoid Cells in Peripheral Blood in ALS
Amyotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disorder characterized by progressive muscle weakness and eventual death. Studies demonstrate that the immune system plays a key role in ALS progression; however, the role of the immune system is unclear, as various aspects can play both a beneficial and detrimental role in the disease course. Attempts to universally suppress the immune system in ALS patients have at best had negligible effects on progression or at worst accelerated the disease. Thus, there is a critical need to identify immune cell populations to serve as biomarkers and therapeutic targets.
Genomic Translation for Amyotrophic Lateral Sclerosis Care (GTAC) – not recruiting
The purpose of this study is to look for abnormal genes and gene expression profiles that help determine why a person develops amyotrophic lateral sclerosis (ALS) and related motor neuron diseases (MND) and why their symptoms present and progress with a particular pattern. The investigators will analyze the genome and gene expression patterns of people with ALS/MND and carry out research on that data, finding insights that the investigators hope will translate into better care for ALS/MND patients.
National ALS Registry
We encourage all of our patients to register for the National ALS Registry, which is operated by the Centers for Disease Control and Prevention. Participation in the National ALS Registry is voluntary, however, joining it can help scientists defeat ALS. In addition, through your registration you may be able to participate in research trials offered through the country.
Join the National ALS Registry
Tissue Donation Program – not currently recruiting
Some of the most important discoveries about the causes of ALS come from studying tissue from persons that had ALS. For this reason, some of our patients choose to donate their brain and spinal cord after death for research purposes. This tissue allows us to advance our understanding of ALS and develop new therapies. This program is of no cost to patients and families and does not delay funeral arrangement. Please talk with us if you are interested in participating.
Completed Studies
Validation Study of the ALS Specific Quality of Life – Short Form Instrument
This study aimed to validated a shortened version of the ALS Specific Quality of Life – Short Form Instrument (ALSSQOL-SF). The ALSSQOL-SF is a short questionnaire that asks broad questions about emotional, spiritual, and support related issues.