What is the Research Registry?
The Registry is a database maintained in the Clinical Neurosciences Laboratory at the University of
Toronto Scarborough. The database contains a list of individuals who may want to volunteer for clinical research studies. The information gathered through the registry will be made available to researchers in the Clinical Neurosciences Laboratory to help them identify individuals who might be eligible to participate in specific research studies. These studies are typically aimed at learning about the causes of psychiatric disorders.
Who should join the Registry?
People ages 16 years or older and who:
• Have been diagnosed with any form of mental illness OR
• Are a first-degree biological relative (parent, child, sibling) of someone who has been diagnosed with any form of psychiatric illness OR
• Have NO personal or family history of severe mental illness
We are particularly interested in persons who have received a diagnosis of a personality disorder and their first-degree relatives, although this is not a requirement to join the Registry.
How will I be contacted?
If you agree to participate in the Registry, you will proceed to an Information Form where you can indicate your preferred method of contact (e.g., telephone, email, postal mail). If your personal information (such as age, gender, and diagnosis) meets the eligibility criteria for a particular study, researchers at the Clinical Neurosciences Laboratory will contact you directly. If you are contacted by a researcher and agree to participate in a research study, your participation is voluntary and may require one or more visits to the Clinical Neurosciences Laboratory at the University of Toronto Scarborough.
What are the potential risks and discomforts?
There are no risks of physical harm associated with participation in this registry. Participation does involve the potential risk of loss of confidentiality; however, this risk will be minimized by removing your identifying information (e.g., name, address, date of birth) from the other information stored in the registry database and storing it separately in a secure location. This will ensure that the file containing your personal information is secure and also limits access of your information to the Clinical Neurosciences Laboratory research team, the Office of Research Ethics, and representatives from applicable government agencies as mandated by law.
What about privacy and confidentiality?
Your information will be kept strictly confidential. Only research personnel from the Clinical Neurosciences Laboratory and authorized University of Toronto or government agencies (as mandated by law) will have access to information in the Registry. The information you provide will be coded with a unique number to ensure that only research personnel from the Clinical Neurosciences Laboratory may be able to know which data are linked to you personally. The information you provide in the
Registry may be retained and used indefinitely. You may, however, end your participation in the Registry or update your contact information at any time.
Are there costs for joining the Registry?
There are no costs associated with participating in the Research Registry.
How can I update my information or withdraw from the Registry?
You can do so by contacting the Registry Manager or Dr. Anthony Ruocco by phone (416-208-2762), email (cnl@utsc.utoronto.ca), or by submitting your request online at http://www.utsc.utoronto.ca/~aruocco/ .
If you decide that you are no longer interested in participating in the Registry, your name and information will be removed from the registry.
