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Do you want to participate in ALS clinical research?
Next steps
Read our ALS & Participation in Clinical Research Guide. It has more information about next steps you may want to take, like searching for a study and talking to your medical providers.
To learn more about ALS clinical research and get help finding opportunities to participate, you can also:
- Search for trials related to ALS on ClinicalTrials.gov
- Contact the Northeast ALS Consortium (NEALS) by emailing [email protected] or by calling 1-855-437-4823
- Explore the ALS Therapy Development Institute’s (ALS TDI’s) ALS Trial Navigator
End-of-life tissue donation resources
If you’re interested in learning more about end-of-life tissue donation, talk to your medical providers to find out what options are available in your area.
You can visit this NEALS webpage for more information about how tissue donation works. In addition, the following programs accept tissue donations from people living with ALS:
- The Brain Donor Project
Email: [email protected]
Phone: 513-393-7878 - National Disease Research Interchange (NDRI) Donor Program
Phone: 800-557-7361 - U.S. Department of Veterans Affairs Biorepository Brain Bank (VABBB): Brain tissue donation for Veterans
Phone: 866-460-1158
Expanded access
If you’re interested in learning more about expanded access, talk to your medical providers. They may be able to recommend a program in your area. You can also visit this NEALS webpage for more information about how expanded access programs work.
Next steps
It’s okay if you’re not sure or you’re not ready to learn more about ALS clinical research. Remember, participating in clinical research is voluntary — it’s always your choice.
If you decide you do want to learn more, read our ALS & Participation in Clinical Research Guide or talk to your medical providers. You can also always come back to this tool.
Next steps
Participating in clinical research isn’t right for everyone — and that’s okay. It’s always your choice. If you ever decide that you do want to learn more, you can always come back to this tool to learn more about it.