Greetings all,

For some this (hopefully) is a repeat notification, but we want to be sure as many as possible SLPs supporting people living with ALS participate; so thought I would post here.

We here at the Jay S. Fishman ALS Augmentative Communication Program, are part of a team that is trying to better understand practice patterns and educational supports and training that is needed to provide the very best care to people with ALS and their families.

The survey (in the link) has been distributed over the past couple of weeks with a fair number of responses – mostly from North America.

I am sending to you to ask for assistance with distributing this to a wider group to achieve an even greater response in North America.   In addition, please send to any SLP working in ALS clinical care you know outside of North America.   We want there to be broad international representation in the responses and the resulting recommendations/action plans. 

Please consider distributing this to your speech-language pathology network as well as to your ALS care provider network, which may have SLP representation.

I TRIED to attach a document but I think I recall that attachments don’t work with this list SO I am putting the content in the body of this email:

……………………………..

NSU Consent to be in a Research Study

Who is doing this research study?

The person doing this study is Dr. Lauren Tabor Gray with NSU Health and Neuroscience Institute at Nova Southeastern University, in collaboration with Drs. Emily Plowman, Kendrea Garand and Stacey Sullivan, MS, CCC-SLP.

Why are you asking me to be in this research study?

You are being asked to take part in this research study because you are a certified speech-language pathologist who is involved in the evaluation and management of speech, swallowing and communication impairments in patients with amyotrophic lateral sclerosis (pALS).

Why is this research being done?

The purpose of this study is to characterize the practice patterns of speech language pathology (SLP) clinicians who work with pALS.

What will I be doing if I agree to be in this research study?

You will be taking a one-time, anonymous survey. The survey will take approximately 15 minutes to complete.

Are there possible risks and discomforts to me?

This research study involves minimal risk to you. To the best of our knowledge, the things you will be doing have no more risk of harm than you would have in everyday life.

What happens if I do not want to be in this research study?

You can decide not to participate in this research and it will not be held against you. You can exit the survey at any time.

Will it cost me anything? Will I get paid for being in the study?

There is no cost for participation in this study. Participation is voluntary and no payment will be provided.

How will you keep my information private?

Your responses are anonymous. Information we learn about you in this research study will be handled in a confidential manner, within the limits of the law. Data collected from this online survey is anonymous and cannot be linked to individual participants. This data will be available to the researchers, the Institutional Review Board and other representatives of this institution. All confidential data will be kept securely on a password protected electronic database. All data will be kept for 36 months from the end of the study and destroyed after that time by deleting the electronic database.

Who can I talk to about the study?

If you have questions, you can contact Dr. Gray at xxxxxx@nova.edu.

If you have questions about the study but want to talk to someone else who is not part of the study, you can call the Nova Southeastern University Institutional Review Board (IRB) at (954) 262-5369 or toll free at 1-866-499-0790 or email at xxxxxx@nova.edu.

Do you understand and do you want to be in the study?

If you have read the above information and voluntarily wish to participate in this research study, please follow the link to access the online survey.

Qualtrics Link:

https://qfreeaccountssjc1.az1.qualtrics.com/jfe/form/SV_bkY5KxRAD0V4prE

QR Code access:

………………………

THANK YOU!

John

John M. Costello, MA CCC-SLP/ Phone: 781.216.2220
Director, Augmentative Communication Program and

ALS Augmentative Communication Program | Boston Children's Hospital  
www.childrenshospital.org/acp

www.bostonchildrens.org/ALSAugcomm

https://www.childrenshospital.org/programs/inpatient-augmentative-communication-program

https://www.childrenshospital.org/programs/autism-language-program

www.facebook.com/acpchboston

If you would like to support our work, please use the links below (and THANK YOU!):

Augmentative Communication Program

www.bostonchildrens.org/AugmentativeCommunicationProgram

Jay S. Fishman ALS Augmentative Communication Program

http://childrenshospital.org/JaySFishmanALSAugComm

Latest publication: 50 FREE copies: Costello & Smith (2022): The BCH message banking process, voice banking, and double-dipping, Augmentative and Alternative Communication, DOI:10.1080/07434618.2021.2021554

https://www.tandfonline.com/eprint/HHNYG44UC42CB9JFXWR5/full?target=10.1080/07434618.2021.2021554