Informed Consent Form and Study Information

Date: February 3, 2023
Study Name:  Defining End of Life in Eating Disorders: Views on the Proposed Criteria for Terminal Anorexia
Researchers: Anita Federici, PhD Psych FAED, Sara Robb, MSW, RSW
Purpose of the Research:
This project aims to better understand different perspectives on recently proposed clinical characteristics of terminal anorexia nervosa (Gaudiani et al., 2022). Such criteria have substantial implications as they will be used to identify eligibility for Medical Assistance in Dying (MAiD). Presently there is no consensus with respect to defining what constitutes palliative or terminal definitions of anorexia. Thus, this project seeks to explore how people with lived experience, caregivers for those with EDs, and ED clinicians view the proposed criteria for terminal anorexia. Our goal is to better understand different perspectives on this controversial topic to help inform future discussion, research projects, and theory when discussing MAiD for eating disorders.
What You Will Be Asked to Do in the Research: 
As part of this research project, you will be asked to (a) review and sign this research consent form, (b) answer a brief demographic form, and (c) respond to 4 questions related to the topic of terminal anorexia both in a likert style fashion (agree/disagree) and in a written response style (e.g., please explain why you agree….). The estimated time commitment is approximately 20 minutes.
Risks and Discomforts:
Participants may experience some feelings of discomfort, upset, or anxiety when completing the survey due to the serious nature of the topic of study. This study is voluntary and you can stop at any time. You also do not have to respond to all of the questions if you feel uncomfortable. If you do feel upset during or after this questionnaire, support is available to you through the National Eating Disorder Information Centre’s helpline at 1-866-NEDIC-20 and 416-340-4156. NEDIC also has a live chat line available at NEDIC | home (
Benefits of the Research and Benefits to You:
Participants will gain knowledge about qualitative research methods and will have an opportunity to reflect on their own experience and perspectives on the criteria proposed for terminal anorexia. In addition, your perspectives will help to inform future discussions and research on the subject matter.
Voluntary Participation and Withdrawal:
Your participation in the study is completely voluntary and you may choose to stop participating at any time.  Your decision not to volunteer, to stop participating, or to refuse to answer particular questions will not influence the nature of your relationship with York University either now, or in the future.  In the event you withdraw from the study, all associated data collected will be immediately destroyed wherever possible. Should you wish to withdraw after the study, you will have the option to also withdraw your data up until the analysis is complete. 

All information you supply during the research will be held in confidence and unless you specifically indicate your consent, your name will not appear in any report or publication of the research. Your data will be collected through the online questionnaire platform (Survey Monkey) and safely stored in a locked facility on a research approved laptop and only research team members will have access to this information. The data will be stored for one year and then destroyed on May 15th, 2024. Confidentiality will be provided to the fullest extent possible by law.

The researchers acknowledge that the host of the online survey (e.g., Survey Monkey) may automatically collect participant data without their knowledge (i.e., IP addresses.) Although this information may be provided or made accessible to the researchers, it will not be used or saved without participant’s consent on the researcher’s system.  Further, “Because this project employs e-based collection techniques, data may be subject to access by third parties as a result of various security legislation now in place in many countries and thus the confidentiality and privacy of data cannot be guaranteed during web-based transmission.”

Questions About the Research?  If you have questions about the research in general or about your role in the study, please feel free to contact Dr. Federici either by telephone at (249) 492-2673 or by e-mail (  This research has received ethics review and approval by the Human Participants Review Sub-Committee, York University’s Ethics Review Board and conforms to the standards of the Canadian Tri-Council Research Ethics guidelines.  If you have any questions about this process, or about your rights as a participant in the study, please contact the Sr. Manager & Policy Advisor for the Office of Research Ethics, 3rd Floor, Kaneff Tower, York University (telephone 416-736-5914 or e-mail

Question Title

* 1. Legal Rights and Signatures:

I consent to participate in the study entitle “Defining End of Life in Eating Disorders: Views on the Proposed Criteria for Terminal Anorexia” conducted by Dr. Anita Federici and Sara Robb. I have understood the nature of this project and wish to participate.  I am not waiving any of my legal rights by agreeing to participate.