FREQUENTLY ASKED QUESTIONS
What is IN-ROADS?
Our study is called IN-ROADS, which stands for the “International Network for Research Outcomes in Adolescent Depression Studies” Initiative. The participants in the IN-ROADS project will include youth, family members, researchers, therapists, and clinicians from around the world, who will work together for the next year or so on this study. IN-ROADS is funded by the Cundill Centre for Child and Youth Depression at the Centre for Addiction and Mental Health (CAMH), Toronto, Canada.
What is a Core Outcome Set?
Research is required to help patients and healthcare providers decide which treatments are safe and most effective. Researchers look at the effects of treatments on patients by measuring an “outcome.” For example, a researcher might measure a patient’s energy levels as an outcome of treatment. If the patient’s energy levels improved throughout the treatment study, this treatment would be described as effective! A core outcome set (COS) is a short list of the most important outcomes in adolescent depression treatment studies.
What's the problem?
The problem is researchers report and measure outcomes they think are important to see improvements in during treatment, but we also want to know which outcome(s) (i.e., aspects of life) you think are important and need to be measured as part of a treatment study for adolescents with depression.
Why are we doing this?
We want to make sure our COS reflects the opinions and voices of the youth and family members of youth who have experienced depression. We want to make sure these outcomes are part of our final set of outcomes that researchers everywhere can measure when they conduct a study on treatment for adolescent depression. Measuring the same outcomes in the same way means we can compare findings from different studies, which makes it easier to find out which treatments work the best for adolescents experiencing depression!
A COS needs to include outcomes that are most relevant to youth and family members, and the best way to do this is to involve youth and family members in the development of a COS! There are examples of how involving youth identified an outcome that was important to them as a group, but which might have been overlooked if researchers/clinicians had done the work on their own. You know what it’s like to live with depression, so you should have a say in deciding which outcomes end up in a COS for adolescents with depression. By participating in the IN-ROADS Workshop and/or the IN-ROADS Delphi Survey, you can help ensure that researchers are measuring outcomes that matter to you.
Who can get involved?
Youth between the ages of 12 and 24.
Have lived or living experience with depression or major depressive disorder.
Have access to the internet and a device that can access Zoom.
Be available for the online workshop between June and September 2021.
No prior experience with research is needed!
Workshop: What is the commitment?
We estimate that the time commitment will be 90 minutes, once.
The link to the workshop registration form is included at the end of this letter, and this form will contain anticipated dates of the virtual workshop, so that you can indicate your availability. Once workshop dates are finalized, you will receive a Zoom meeting invitation and link for the virtual workshop.
Participating in this study is voluntary. Your information will be "de-identified" so your name or other identifying information will not be used when reporting data. You do not have to be in this study if you do not want to be. You can choose to drop out of this study at any time.
As a participant, you will receive community involvement (volunteer) hours and a gift card of $25.00 to a café or retail store (e.g., Starbucks or Tim Hortons) to thank you for your time.
Workshop: What will I do?
Your participation in this study will involve participation in a virtual workshop.
Workshops will be audio recorded in order to accurately capture participant input.
Each workshop will have about four to six other youths and two facilitators – one facilitator will be a clinician or researcher and the other will be a youth facilitator who interacts with other youth for research-related projects.
In the workshops, you will be asked your opinion on which outcomes are important to measure in future research studies for depression in adolescents.
Prior to the workshop, you will receive some information about the workshop to help you prepare.
Where can I register for the workshop?
You can register to participate by clicking the button below!
DELPHI SURVEY PARTICIPATION
Delphi Survey: What is the commitment?
We estimate that the time commitment will be 30 to 60 minutes for each survey round, for up to three rounds over three months.
The link to the Delphi study registration form is included at the end of this letter.
Participating in this study is voluntary. Your information will be "de-identified" so your name or other identifying information will not be used when reporting data. You do not have to be in this study if you do not want to be; you can choose to drop out of this study at any time.
Delphi Survey: Compensation?
As a participant, you will receive community involvement (volunteer) hours and the opportunity to receive one of 20 gift cards valued at $25 each which will be distributed randomly among participating youth.
Delphi Survey: What will I do?
Your participation in the IN-ROADS Delphi study will involve completion of two to three survey rounds (electronically) in late 2021.
You will have approximately three weeks to complete each round of the survey.
The surveys will also be completed by family members and health professionals. You will see the summarized results of the first survey and do a second survey to again rate the outcomes. There may be a third survey, depending on the results of the first two surveys.
As part of the Delphi study you will be asked about your opinion as to which outcomes you think are the most important.
You may also join the final consensus meeting to discuss and finalize the COS (optional).
Where can I register for the Delphi survey?
You can register to participate by clicking the button below!