We've all heard about how environmental toxins can impact the development of amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases like Parkinson’s disease and dementias such as Frontotemporal Dementia (FTD) and Alzheimer’s disease. Let's work together to understand how these toxins impact our brain health.
Click here to join the EXposure and PhenOtyping Study Examining ALS (EXPOSE-ALS) Study.
What is the EXposure and PhenOtyping Study Examining ALS (EXPOSE-ALS) Study?
The EXPOSE-ALS Study wants to understand the impact of environmental exposures on health, particularly risk of ALS and other neurodegenerative diseases. Our goals are to:
- Understand how environmental toxins and exposures in the home and work environment can contribute to the development of neurodegenerative diseases such as ALS, Parkinson’s disease, and dementias.
- Learn how to detect symptoms of these neurodegenerative diseases early, before symptoms are noticeable.
- Learn how to develop strategies to help prevent the onset of diseases like ALS and neurodegeneration.
Depending on your age, joining the study means filling out questionnaires throughout the year and providing a sample of DNA (collected via saliva or a swab of your mouth and sent via mail).
FAQ
What is the EXposure and PhenOtyping Study Examining ALS (EXPOSE-ALS) Study all about?
The EXPOSE-ALS Study wants to understand the impact of environmental exposures on health, particularly neurodegeneration risk. Neurodegeneration includes conditions such as mild motor impairment, amyotrophic lateral sclerosis (ALS), Parkinson’s disease, mild cognitive impairment, and dementia. We are studying environmental exposures that occur in occupational and non-occupational settings such as metals, chemicals, and air pollution as well as other lifestyle factors. We will combine information that you provide to us via surveys and link to information we gather from biofluids (such as saliva samples).
Who is running the EXposure and PhenOtyping Study Examining ALS (EXPOSE-ALS) Study?
The EXPOSE-ALS Study is run through the NeuroNetwork for Emerging Therapies and the ALS Center of Excellence at the University of Michigan.
Why is my help important to the EXposure and PhenOtyping Study Examining ALS (EXPOSE-ALS) Study?
People that have a family history of neurodegenerative conditions such as ALS or dementia or have certain occupational exposures may be at higher risk of neurodegeneration. We are attempting to understand how such exposures impact health. Information learned from this study may help us learn about whether and how these environmental exposures cause neurodegenerative health problems like ALS and dementia and may help us find ways to prevent these neurodegenerative diseases. It is important that people from all backgrounds participate in this study so that the results will apply to everyone.
Is this research only about one type of neurodegenerative disease?
No, we wish to learn about all forms of neurodegenerative diseases and the common links between them.
Who can participate in the EXposure and PhenOtyping Study Examining ALS (EXPOSE-ALS) Study?
Men and women aged 18 and above who have a family history of ALS or an ALS spectrum disease (such as frontotemporal dementia).
Will I have to go anywhere to participate?
No, participation is 100% remote. You will complete the consent and questionnaire on your computer or mobile device. If you're asked to provide saliva samples, we will mail those kits to your home and you will be asked to return them via pre-paid mail.
How long will the study last?
We began recruiting participants in 2023, and we will continue to follow participants for a long time (decades) thereafter to see who develops changes in neurological health.
Who makes sure this study is safe?
Our research is reviewed and monitored by the University of Michigan Institutional Review Board (IRB). They ensure that the study is performed ethically and safely.
What if I change my mind after I sign up?
You are free to stop or pause participation or leave the study at any time without any penalty. Please tell a member of the study team if you wish to leave the study so we can remove you from our follow up lists.
Will I have to give any biological samples?
In the future, there may be options, with your consent, to provide optional blood, saliva, and other biospecimen samples.
Can I still participate if I do not want to give biosamples?
Yes, you may still complete the questionnaire portion of the study.
I don't have a computer, can you mail the questionnaire to me?
If you are not able to complete the activities on a smartphone, computer, or tablet, we can mail your consent and questionnaire documents.
What is the annual questionnaire?
The annual questionnaire will ask for any changes in your health and functional status to learn about things that may change over time.
What happens if I move or change my contact information while I am in the study?
If you move or change your contact information after you have enrolled, you can contact our team to update your information or you may provide your updated information during your next check-in point.
Can I get the results of my biospecimen tests?
Any of the tests that we perform on biofluids are for research purposes only and they do not meet the rigorous requirements for clinical testing. Thus, we are not able to return any results.
Will my information be kept confidential?
All data will be stored electronically in password protected databases on University of Michigan resources. Only the research team will have access to the data with your personal identifying information. Any data shared with other researchers will have personal identifying information (e.g., your name, date of birth, address) removed.
What will you do with my information?
We will keep the information and biospecimen samples we collect from you during the study, including information we learn from analyzing your blood and saliva samples, for future research projects. We may not test these specimens for all participants in the study. This will depend on the amount of funding we have available. The results of this study could be published in an article or shared in a presentation, but will not include any information that would let others know who you are.
Will my insurance company or employer obtain the information I give you as part of the study?
No, neither your insurance company nor employer will have access to any information you share with us.
What should I do if I think I might have ALS or a neurodegenerative condition?
Please speak with your primary care doctor, and if necessary, they can refer you to a neurologist for an assessment.
Questions? Concerns? Contact Us
If you have additional questions, please call or send us an email using the contact information provided below.
- Study Phone: (734) 936-8775
- Study Email: [email protected]
- Address:
300 N. Ingalls
Room 3D02 SPC 5431
Ann Arbor MI 48109-5431
UM IRB Application Number
HUM00229303
Meet the Research Team
- Stephen Goutman, MD, MS (Co-Principal Investigator)
- Eva Feldman, MD, PhD (Co-Principal Investigator)
- Stacey Jacoby, PhD
- Jayna Duell, RN
- Aanchal Gopalan, BDS, MPH
- Carli Piecuch, BS
- Alyssa Braun, BSPH
- Adam Patterson, BS, MADS
- Samuel Teener, BS
Click her to join the EXposure and PhenOtyping Study Examining ALS (EXPOSE-ALS) Study.
