This website is designed to provide additional information to individuals who have been contacted to participate in an important University of Pittsburgh study of environmental risk factors for ALS.
What are we studying?
We are studying a disease called ALS (Amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease. It is the most common motor neuron disease in adults with over 17,000 people in the U.S. currently living with the disease. ALS attacks and kills nerve cells in the brain and spinal cord resulting in muscle wasting and death. It affects the ability to talk, swallow and breathe. There is no known cause and currently no treatment. Those with ALS often die within a few years of diagnosis.
Who are we?
We are researchers from the University of Pittsburgh Graduate School of Public Health who study the role of the environment in the development and risk of diseases. Visit our About Us to learn more.
Why is this research being done?
The purpose of this research study is to look at possible risk factors for ALS, using information from the CDC National ALS Registry of individuals with ALS (cases) compared to a group of people without ALS (controls). A risk factor is an exposure or characteristic that puts you at greater risk for disease, (e.g., cigarette smoking is a risk factor for lung cancer.)
There are environmental, occupational, and personal risk factors which may be associated with an increased risk for ALS. We are exploring these risk factors in the hopes of identifying more about what causes this disease.
Who is being contacted for this study?
We are recruiting a control group—that is people without ALS—to compare to participants with ALS throughout the country. Potential controls are being recruited to participate in the study based on where they live and specific characteristics such as gender and age.
What will we ask participants to do?
Participants will be asked to complete a 30 minute telephone interview or online survey and to provide a one-time small blood sample either at home or work place. Participants will receive $60 for completing the interview and for donating this blood sample.
What the research hopes to show:
We want to determine if there are specific environmental or occupational exposures related to the risk for this disease. The blood sample from control participants will be used to compare with the sample from the ALS cases and will be tested for chemicals that persist in the body over a long period of time (such as pesticides).
Confidentiality
Any information provided for this research study will be kept strictly confidential and information will be aggregated with no individual identification.
Who is paying for this study?
The study, Identification and Characterization of Potential Environmental Risk Factors for ALS Using the ATSDR ALS Registry Cases and a Control Population, is funded by the National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (ATSDR), Centers for Disease Control and Prevention (CDC) National ALS Registry, Atlanta, GA.