Improving Shared Decision-making Surrounding Feeding Tube Placement in People Living with ALS

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Study Title: Improving Shared Decision-Making Surrounding Feeding Tube Placement for People Living with ALS

Principal Investigator: Bridget Perry, PhD, CCC-SLP

Study Description and Purpose: The purpose of the research is to better understand how participants with ALS feel about and make decisions about feeding tube placement. If you agree to participate in this study, you will be asked to complete a survey asking you questions about your medical condition as well as about your beliefs, preferences, goals and concerns surrounding feeding tube placement. The survey will take about 30-45 minutes to complete. You will be able to stop the survey and return to complete it at a later time.

Study Population: People over the age of 18 years who are currently living with ALS.

Risks and Benefits: The risks or discomforts associated with the research are minimal. The primary risk would be the risk to related to breach of confidentiality, but researchers will make every attempt to ensure confidentiality of interviews is maintained. All data will be stored securely in compliance with Mass General Brigham protocol. Only approved study staff listed on the IRB application will have access to the survey responses. To protect patient privacy, identifiable health information will be stored on a HIPAA compliant dropbox account and accessed with a computer on the Partners network with password protections enabled and anti-virus software or an encrypted laptop. Access to identifiable data will be limited to study staff by use of password-protected files or restricted shared file areas. Participants' identifiers will be replaced with a study ID or code, and the key to the code will be stored in a password-protected file. Direct identifiers, including email address and date of birth, will be removed once all of the data is collected and analysis will be performed on de-identified data. Despite taking steps to protect your privacy, we can never fully guarantee your privacy will be protected. The information gathered in this study may benefit a variety of stakeholders (including parents) by advancing healthcare providers understanding of patient's preferences, goals and concerns surrounding feeding tube placement.

If you have questions, concerns, or have experienced a research-related injury, contact the research team at:
Bridget Perry
617.643.0863
swallcollab@mghihp.edu

If you'd like to speak to someone not involved in this research about your rights as a research subject, or any concerns or complaints you may have about the research, contact the Mass General Brigham IRB at (857) 282 1900.

Selecting Submit below confirms you are a person living with ALS and acts as your consent to participate in this study:

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