You are invited to participate in a web-based online survey on the direct and indirect costs associated with living with or caring for someone with a neuromuscular disorder and impacts on quality of life. This is a research project being conducted by Muscular Dystrophy Canada. The purpose of this survey is to collect individual- and caregiver- reported outcomes to better understand the burden of neuromuscular disorders on patients and their caregivers in Canada. It should take approximately 1 hour to complete. If necessary, you can save and return to the survey at any time. You can also email firstname.lastname@example.org or call 1 800 567-2873 ext. 9037 to schedule a time to complete the questionnaire by phone.
Your participation in this survey is completely voluntary. You may refuse to take part in the research or exit the survey at any time without penalty. If you decide not to participate there will not be any negative consequences. Please be aware that if you decide to participate, you can withdraw your submitted responses up to 1 month from the submission date or prior to the data results being published.
This consent form asks you to allow Muscular Dystrophy Canada to view your responses and your comments as data in this study.
Your responses may help us learn more about the factors associated with quality of life for individuals impacted by neuromuscular disorders. The information we get from this study may help us to plan for MDC mission objectives, influence positive change, that is, public policy efforts and advocate for better treatments and services to the meet the needs of patients with neuromuscular disorders and their caregivers in the future.
The possible risks or discomforts of the study are minimal.
This study focuses on the burden and impact of neuromuscular disorders on patients and caregivers in Canada. As such, some of the survey questions ask about your day-to-day life as it relates to your health condition. Reflecting on your health and thinking about your experiences could be upsetting and distressing for some individuals. You may feel a little uncomfortable, sad, tired from answering personal, sensitive and many survey questions.
ALTERNATIVES TO PARTICIPATION
This research study is for research purposes only. The only alternative is to not participate in this study.
COMPENSATION AND COSTS
You will not receive any monetary compensation for your participation in this study.
There is no cost to you, your private medical insurance (if any), or the public health insurance plan, for study participation.
Your identity will be kept confidential at all times, except where disclosure is required by law. Data collected from your participation in this research study will be de-identified and held in a Personal Information Protection and Electronic Documents Act (PIPEDA)- secured database for data analysis. Data will be stored in a password protected electronic format. Muscular Dystrophy Canada will not publish information connected to you such as your name, email address, IP address. Therefore, your responses will remain anonymous. No one will be able to identify you or your answers, and no one will know whether you participated in the study. Muscular Dystrophy Canada will maintain the confidentiality of the research records.
Please note, if you choose to provide medical information such as your diagnosis, use of health services and costs, name of healthcare professional, your survey responses may no longer be anonymous to the Muscular Dystrophy Canada Research Team. However, no names or any identifying information would be included in any publications or presentations based on these data, and your responses to this survey will remain confidential.
Representatives of the research ethics review board - Advarra IRB (an independent ethics committee that reviewed the ethical aspects of this study to help protect the rights and welfare of study participants), may have access to the information collected for this study, at the study site.
By selecting “Agree”, you will not lose any of your legal rights or release anyone involved in the research from responsibility for mistakes.
WHOM TO CONTACT ABOUT THIS STUDY
If you have questions at any time about the study or the procedures, you may contact Dr. Homira Osman via phone at 437-912-9037 or via email at Homira.Osman@muscle.ca.
An institutional review board (IRB) is an independent committee established to help protect the rights of research subjects. If you have any questions about your rights as a research subject, and/or concerns or complaints regarding this research study, contact:
Study Subject Adviser
6940 Columbia Gateway Drive, Suite 110
Columbia, MD 21046
Please reference the following number when contacting the Study Subject Adviser: Pro00041501.