Informed Consent Form
Date: July 5, 2025
Study Name: SAFE-AID: Self-injury and Aggression Functional Evaluation for People with Autism and Intellectual Disabilities
Researcher name: Ethan Rinaldo, Psychology, M.A. York University, & Dr. Adrienne Perry, Psychology, Ph. D., Principal Investigators, contact: safeaid@yorku.ca
Purpose of the Research: The goal of this research is to design and test a measure of aggressive and self-injurious behaviour for individuals with developmental disabilities such as autism and intellectual disability. We intend for this measure to assess the degree to which an individual engages in these behaviours as well as to assess what may be causing these behaviours to occur. We are conducting this research online through a survey that is being distributed to individuals who provide care for people with developmental disabilities. We aim to present the information collected as part of this study through the publication of articles in scientific journals as well as via presentations at academic conferences. In addition, we hope to make the measure we are studying available to the public for use in research and clinical practice.
What You Will Be Asked to Do in the Research: You will be asked to participate in the following questionnaire that contains our measure with an individual that you provide care for in mind. We estimate that this survey will take approximately 15 – 20 minutes to complete.
Risks and Discomforts: While we do not foresee any risks or discomfort from your participation in the research it is possible that thinking about the topic of this questionnaire (self-injury and aggression) may cause some discomfort. If there are any questions you would prefer not to answer, then you may skip the question(s) and connect with local support services for individuals and families of individuals with developmental disabilities.
Benefits of the Research and Benefits to You: We hope the design and evaluation of this measure will be useful for other researchers as well as caregivers in assessing the frequency, severity, and cause of aggressive and self-injurious behaviour in individuals with developmental disabilities.
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 the ongoing relationship you may have with the researchers or study staff, or 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.
Confidentiality: Unless you choose otherwise 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. All information will be obtained via the questionnaire. Your data will be safely stored on the QuestionPro server until data collection has been completed, after which it will be downloaded and stored on a password protected computer and only the researcher will have access to this information. The data will be stored indefinitely in this method however all indirectly identifying information will be removed after data analysis has been completed. Confidentiality will be provided to the fullest extent possible by law.
The data collected in this research project may be used – in an anonymised form - by members of the research team in subsequent research investigations exploring similar lines of inquiry. Such projects will still undergo ethics review by the HPRC, our institutional REB. Any secondary use of anonymised data by the research team will be treated with the same degree of confidentiality and anonymity as in the original research project.
Please note that at the end of the study, anonymised data may be deposited into one or more publicly accessible scientific repositories, such as York University Dataverse, an institutional research data repository, managed by York University Libraries and provided by Scholars Portal on behalf of the Ontario Council of University Libraries (OCUL), through which researchers from around the world will have access to these data for future research, through a [CC, CC-BY, CC-BY-NC, or other] standard data sharing license.
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