Sample Consent Form for Parents or Caregiver of a Non-Autistic Child

 

It must be recognised that, in some circumstances, confidentiality of research data and records may be overridden by courts in the event of litigation or in the course of investigation by lawful authority. In such circumstances the University will take all reasonable steps within law to ensure that confidentiality is maintained to the greatest possible extent.

 

If you agree to both you and your child’s participation in this research study, please complete the consent form below:

 

I have read (or been read to) the information about the study. I have had the opportunity to ask questions and all my questions have been answered to my satisfaction.

I understand the information and what taking part in this study involves.

I confirm that I have read the inclusion and exclusion criteria and that my family is eligible to participate.

I am willing for my child to participate in the project, but I feel under no obligation to allow this participation.

I am willing to participate in the project, but I feel under no obligation to do so.

I understand that the information collected in the study will be kept strictly confidential.

I understand that I can withdraw myself or my child from the study without giving an explanation.

I understand that I cannot withdraw my or my child’s data from the study after the results of the study have been published.

I freely and voluntarily agree for myself and my child to be a part of this research study, having been made fully aware of the risks and benefits.

 

Consent to the use of Personal, Questionnaire, Sensor and Genetic Data

I consent to the use of the information collected about me (personal data, questionnaire data, senor data and genetic data) for this study.

I consent to the use of the information collected about my child (personal data, questionnaire data, sensor data, and genetic data) for this study.

I consent to the following data about my child being shared with a third-party service provider (VitalThings)

• sensor data (movement, room temperature, light and noise)
• age
• biological sex

I understand that sharing these data is essential for the purpose of analysing this data.

I also know that this data will be stored for 10 years after completion of the study in pseudonymised form in Maynooth University.

I consent to my saliva sample and my biological sex information, and that of my child’s, to go to a third-party service provider (TBD) for DNA extraction. I know that they will not retain these saliva samples or biological information.

I consent to my questionnaire data being shared with a third-party service provider onlinesurveys.ac.uk. I know that they will not retain this information. I know that all survey data will be retained and hosted on a third party (Online Surveys) server and not on a Maynooth University server.

I consent to my name and my child’sname being shared with onlinesurveys.ac.uk in relation to my consent form and their assent form. I know that all survey data will be retained and hosted on a third party (Online Surveys) server and not on a Maynooth University server.

I consent to my DNA sample and my biological sex information and that of my child’s being sent to a third-party service provider for genetic analysis (where they will analyse your and your child’s genetic code). I know that they will not share this data with anyone outside of the research team at Maynooth University and that they will not retain this data. I know that this data will be stored for 10 years after completion of the study in pseudonymised form in Maynooth University.

 

Data Retention, Data Sharing and Future Research (My Child’s Data)

I consent to my and my child’s pseudomised questionnaire data, sensor data and genetic data being retained for 10 years after the completion of the study.

I know that this pseudomised data could be used in future research or for teaching

I consent to being recontacted by a member of the research team 10 years after completion of the study to ask for consent to continue to retain my and my child’s data for future research.

 

Participant’s Name (Printed):……………………………………….…………………………
Participant’s Signature:…………………………………………………………………………………
Date:……………….…………………………………………………………………………………………………………………