The Global Report on Developmental Disabilities

Pilot Knowledge Translation Strategies for Neurodevelopmental Disorders

Canadian Survey

Dear all,

The COVID-19 pandemic is hard for everyone but coping with the pandemic can be even harder for people with disabilities and their families. We are inviting Canadian families to contribute to the World Health Organization’s Global Report on Developmental Delays, Disorders, and Disabilities. Your response to a brief survey  will help to identify service needs and inform policies related to the pandemic.

Before you start, please read the Informed Consent to see if you agree to answer the questions.

After completing the survey, we will send you a gift of $15 as a thank you for your participation.

On behalf of the project team, we thank you for your participation.

Dr. Mayada Elsabbagh and Dr. Keiko Shikako-Thomas

INFORMED CONSENT

Project Title: Pilot Knowledge Translation Strategies for Neurodevelopmental Disorders

Sub-Project Title: Navigation (Survey)

Principal Investigator:

Dr. Mayada Elsabbagh, Department of Neurology and Neurosurgery, McGill University

 

Who funds the study?

Canadian Institutes of Health Research (CIHR), Brain Canada, Genome Canada, Autism Speaks Canada, Public Health Agency of Canada

 

Background

We are inviting you to take part in a knowledge translation study. Our long-term goal is to support evidence uptake in the community and therefore improve quality of life for families and individuals affected by neurodevelopmental conditions.

Recently, measures taken to manage the COVID-19 outbreak may have affected your lives. Understanding your current and future needs during a time like this can help us understand how best to support other families and individuals with similar needs.

Your participation in the study will support this process by offering important insights from your experience as a knowledge user. Before deciding to participate in the study we invite you to read the information below and ask the study team to answer any remaining questions or supply further information.

 

WHAT IS THE PURPOSE OF THE STUDY?

We are requesting your participation in an electronic survey that will help identify facilitators and barriers to accessing reliable and scientifically valid information about neurodevelopmental conditions and about your current and long-term needs are in your context. We are interested in understanding your experience as a an individual with a neurodevelopmental condition or as a caregiver of someone with a neurodevelopmental condition and how you navigate information.

 

WHAT DOES PARTICIPATION IN THIS STUDY INVOLVE?

We will ask you to complete an on-line survey that can take up to 30 minutes. The survey will explore your experience in accessing information and resources and your current and long-term needs.

 

ARE THERE POSSIBLE RISKS AND DISCOMFORTS?

We do not anticipate any risks or discomfort associated with participating in the study.

 

WHAT ARE THE POSSIBLE BENEFITS FOR ME AND/OR FOR SOCIETY?

By sharing your experience as a knowledge user through this study, you will help accelerate the translation of knowledge gained from research in neurodevelopmental disorders and help shape further research in this area. The evidence gained from this study could potentially inform researchers, policy makers, programs managers in improving their support for individuals affected by neurodevelopmental disorders in their wider community.

 

HOW WILL THE STUDY TEAM PROTECT MY PRIVACY?

All the information collected about you during the study will remain confidential as the law demands. To protect your privacy, your information will be identified with numbers and/or letters. Only the researcher in charge of the study will know the numbers and/or letters that link them to you. Your study information will be kept by the researcher in charge of the study for 25 years. The study information including aggregated anonymized data could be printed in medical journals or shared with other people, but it will be impossible to identify you.

 

IS THIS STUDY VOLUNTARY AND WILL I RECEIVE COMPENSATION?

Your participation in this study is entirely voluntary. You may ask questions about the study at any time and can choose to withdraw your consent. Upon completion of the electronic survey you will receive a gift card valued at $15.

 

CAN PARTICIPATION IN THE STUDY END EARLY?

If you choose to take part now, you can change your mind later and stop at any time and for any reason. If you choose to stop taking part or are taken off the study, the information that was already collected from you during the study will be stored as long as needed to ensure your safety as well as that of other participants in the study and for as long as the law demands.

 

IF I HAVE ANY QUESTIONS OR PROBLEMS, WHOM CAN I CALL?     

If you have any questions, you may contact Afiqah Yusuf (514-412-4400 ext. 23038) or Dr. Mayada Elsabbagh (514-412-4400 ext. 22174).

If you have any questions regarding your rights a research participant please contact the Senior Ethics Administrator at 514-398-8302.