1. Information and consent
First, you will receive information sheets for yourself and your parent or guardian that explain what participating in the study involves.
We want to make sure that you give informed consent. So, before you agree to participate, if you or your parent have questions after reading the information sheets, please feel free to contact our research team either by:
Mail: Projet Neuro-Venture
GRIP | Centre de recherche de l’Hôpital Sainte-Justine
3175 Côte Ste-Catherine, Montréal QC H3T 1C5
Phone: 514 345 4931 | 3151
Once you and your parents have decided to go ahead, please contact us and we will schedule a phone interview to check for medical and other reasons for potential inclusion or exclusion from the study. Once we’ve gone through your information we will phone you to tell you whether you can take part and to give you information about the next step on the journey.
2. Assessment session
You and one of your parents will be invited to participate in the neuro-imaging session that will take place at the Montreal Neurological Institute (MNI).
At the research institute, we will ask you to take part in an interview, to do some more reaction tasks, and to have a brain scan in a so-called magnetic resonance or MR scanner.
You may be asked to perform a number of tasks while lying in the MR scanner. These tasks measure your thinking style and reaction times. You will not have to do much – just press some buttons when a signal is presented. Before each task begins, you will be told in detail what the task will involve. While doing the tasks, the scanner takes pictures of your working brain.
About two and five years after these assessments we will call you to find out how you are doing and schedule you to participate in the study again.
Quite rightly, people are concerned about confidentiality.
We will keep the information you give us confidential. We will not make your details known to third parties.
In particular, information revealed to us will remain confidential from the other members of your family. We keep your responses in confidence and they will not reported to your parent unless you would like us to do so.
Personal data and results from the studies will be stored in such a manner that no unauthorized person will be able to access them. When personal data and biological material are to be transferred to another research site, it will be transferred in anonymized coded form only.
All personal data (e.g. name and address) will be kept strictly separate from the questionnaires, the interview and image data.
All information will be pseudonymized before being used for scientific analysis. “Pseudoymized” means that the questionnaires, the interview, and the results of the imaging will be kept under a special code number when sent for analysis. Personal data will not be disclosed to the scientists carrying out the scientific analyses.