Shared with permission from Melanie Fried-Oken, PhD, CCC-SP

Colleagues: My team, as you know, is working on development and testing of brain-computer interfaces for people with severe speech and physical impairments. We received a grant to examine the bioethics of storing personal vocabulary in devices, with regard to identity or privacy issues. Subjects will receive an ethical stories about language storage in devices, and asked to complete a Qualtrics survey with their opinions. We are sending out recruitment emails to professionals who work with individuals who present with progressive neurological diseases that may place them in a situation where a communication device or BCI might be appropriate in the future. I attach the IRB-approved flyer for the study. (below)
Thank you so much for sharing this with your clients, families or colleagues who fit the inclusion criteria. I'm happy to answer any questions. Mfo

Melanie Fried-Oken, PhD, CCC-SP
Professor, Neurology, Pediatrics, BME, ENT Fellow, ASHA OHSU UCEDD Co-director Oregon Health & Science University Institute on Development & Disability Portland, OR 97239
O: 503-494-7587
xxxxxx@ohsu.edu
www.reknewprojects.org
Pronouns: she/her/hers

Since this listserv doesn't allow attachments, I cut and pasted the flyer:

Do you have or know someone with a neurodegenerative disease? Research Opportunity eIRB#: STUDY00020377

Dr. Melanie Fried-Oken is researching ways to help people with progressive neurological disease use technology for communication. Patients are needed to offer their perspectives on consideration of storing vocabulary in communication devices. You will participate in six short surveys that will be sent to your email account. You may be eligible to participate in this study if you are:   Between the ages of 18-80 years  Have a motor neuron disease diagnosis (ALS, PLS, PSP, PBP)   Or a diagnosed movement disorder (Parkinson’s disease, Multiple System Atrophy)  Able to read and communicate in English   Have access to a computer and Internet to receive our surveys and respond.

Study Details:
 You will be asked to give us your opinions of short descriptions of patients with progressive neurological diseases using communication technology.
You will be compensated for your time including a $5 gift card for each of the first 5 completed surveys and a $25 gift card for completion of the final survey.
For more information or to find out if you qualify for this study, please contact Michelle Kinsella at 503-494-2730 or xxxxxx@ohsu.edu.

Alisa Brownlee, ATP, CAPS | Assistive Technology Specialist/Consultant, Chapter Care Services
The ALS Association | 1300 Wilson Blvd., Suite 600 | Arlington, VA  22209 | alsa.org
Office: 215-631-1877 Cell: 215-485-3441
Email: xxxxxx@alsa-national.org

This email and its contents are confidential. If you are not the intended recipient, please do not disclose or use the information within this email or its attachments. If you have received this email in error, please delete it immediately. Thank you.

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