Many families in Quebec are already participating in scientific research projects. Participating in clinical research has many benefits for individuals, families and for society. How do you know if participating in research is the right choice for you?
What is clinical research and who is involved?
- An experienced and caring team of researchers, physicians and professionals
- A rigorous scientific approach
- A way to integrate innovative research projects into clinical settings, making it easy for families to participate
- Projects that have been approved by a specialized Ethics Committee whose objective is to protect the patient
What can clinical research do?
- Find answers to questions that parents, family members and people with autism often ask:
- What are the causes of autism?
- What is the place of genetics in autism?
- What are the best interventions for my child or for me?
- Improve the quality of services offered to people with ASD and their families:
- Evaluate the effectiveness of existing services or interventions
- Determine how an intervention works
- Develop new services, treatments, or interventions
- Advance knowledge and discovery in ASD
- Create a better understanding of the multitude of ways autism manifests in different individuals, and how we can tailor care
- Make people with ASD and their families partners in advancing research
Before you say YES participating in clinical research, you can ask your research team questions like:
- What is the purpose of the research?
- Who can access confidential data about my child or situation?
- If we are already involved in a research project or are already receiving another intervention, can I participate in the research?
- What are the risks?
- What are the impacts?
- What are the benefits?
- How long and where will the activities take place?
So you have said YES to participating in research! Feel confident that you are taking steps to:
- Understand yourself or your child more deeply
- Help other families with ASD
- Contribute to the advancement of knowledge
- Give your child or yourself the opportunity to benefit from a new intervention, service, treatment or support
A few tips once you’ve said YES:
Before the research project begins:
- What activities will I do?
- If you have an appointment for research?
- Consider and plan your travel
- Plan the best time for your child
- Carefully read the consent form:
- Do you have any questions? Don’t hesitate to ask.
- Are you satisfied with the responses you’ve received?
Remember: You can always end your participation in a research study
- If your situation changes
- If your job or personal circumstances no longer allow you the time to participate
- Or for any other reason.