I am going to attach to this email a couple documents. First, I have scanned into pdf the front copy of our current IRB status report which documents that our IRB approval is current; and also in that same file is a copy of one of our consent forms as documentation of current approval on that. Let me know if you need further IRB documentation. I certainly understand all of that. I will also attach a copy of our flier in legal size. Feel free to print to post or forward to listservs etc. – whatever you feel is best. Below I will also include in the body of this message the same text from the flier – just makes it easier to copy and paste if you want just the text for including in listserv postings etc. The flier does list all of the populations we are currently recruiting – that is how the document was approved through IRB because many clinics serve multiple populations. Hopefully this will work ok.

Also, we have an informational website up if people want more information about the study. This is NOT the questionnaire website – this one is for information only. Interested persons can contact us and we can send them to the questionnaire website or mail them paper forms. It is at:

Carolyn

Research Opportunity

For individuals who have speech, language or cognitive changes due to

ALS, Parkinson’s Disease, Multiple Sclerosis or Head and Neck Cancer

We want to learn how your speech changes have affected everyday communication activities

Who is doing the research?

Researchers at the University of Washington

What is the research about?

We want to learn more about how communication disorders affect participation in everyday life activities. We are developing a questionnaire for healthcare providers to use to better understand the experiences of people with communication disorders.

Who can participate?

· Must have speech, language or cognitive changes due to any of the following conditions:

o ALS (Amyotrophic Lateral Sclerosis)

o MS (Multiple sclerosis)

o PD (Parkinson’s Disease)

o Head and neck cancer (larynx, oral, etc.)

· Diagnosis of medical condition at least 3 months ago

· Age 18 years or older who speak, read and write English.

· We seek racial and ethnic diversity. Minorities are strongly encouraged to participate

· Must live at home or other community setting such as assisted living (nursing home residents are not eligible)

· Individuals must use speech as their primary communication method. You may use writing or augmentative devices to help you communicate at times. Individuals with a laryngectomy may use any speech method (electrolarynx, TEP, esophageal speech)

What will I be asked to do?

· Complete a set of questionnaires

o Questions about the impact of communication disorder on daily communication (e.g. Making phone calls; Talking to clerks in stores)

o Health history and health-related quality of life

o Demographic information (e.g. age, medical history)

· You may fill out these questionnaires at home on your own schedule

· You may fill out these questionnaires online OR on paper forms that we will send you.

What else should I know?

· Receive $20 (check or Amazon.com gift card) for completing the questionnaires

· Allow about 1 hour for questionnaires - work at your own pace

· Your participation is voluntary. You are free to stop at any time.

· Your participation is NOT related to medical care you may be receiving at any healthcare facility. Your participation is NOT related to your involvement in any support or advocacy groups

How do I learn more or sign up to participate?

(Please leave your contact information, diagnosis, and if you prefer online or paper questionnaires)

· More information is on our website: http://staff.washington.edu/cbaylor/

· Email: xxxxxx@xxxxxxxxxxxxxxxx

(Please remember we cannot guarantee the confidentiality of information sent over email)

· Phone: 206-221-3563 (leave voicemail)

· Mail: Carolyn Baylor, Dept. Rehabilitation Medicine, UW, Box 356490, Seattle WA 98195

Carolyn Baylor, PhD, CCC-SLP

Acting Assistant Professor

Department of Rehabilitation Medicine

University of Washington

Box 356490

Seattle, WA 98195

email: xxxxxx@xxxxxxxxxxxxxxxx

phone: 206-221-3563

website: staff.washington.edu/cbaylor

Please note: This email may contain confidential information related to clinical or research activities. This email is intended for the recipient only. If you are not the intended recipient of this email, please do not read it. Please notify the sender and delete the email. Please do not copy, forward or otherwise distribute this email inappropriately.