STUDY TITLE: Mental Health Research Registry
Principal Investigator: Dr. Calvin Sjaarda, PhD, Dept. Psychiatry, Queen’s University
Research Laboratory: Queen’s Genomics Lab at Ongwanada (Q-GLO)
Queen’s Partnership on Neurodevelopmental Disorders (Q-POND)

You are being invited to join a Mental Health Research Registry hosted by Q-GLO/Q-POND (Department of Psychiatry at Queen’s University). Researchers in the Department of Psychiatry at Queen’s University have developed a Mental Health Research Registry (started in 2001) to engage individuals and/or families with and without neurodevelopmental disorders and/or neuropsychiatric conditions by collecting contact information in a centralized research database for the purpose of contacting individuals about various research projects being carried out by or with Q-GLO/Q-POND. This allows researchers to reach out to a larger number of potential research participants for new studies and enables continued contact with past research participants for follow-up and/or collaborative studies (for example using genetic data from one study to compare with MRI imaging data from another study).
Your participation and first-hand experience allows us to study these conditions with a multidisciplinary approach including research fields such as psychology, genetics (including genomics and epigenetics), neuroscience, immunology, microbiome (gut health) and mental health. If you have any questions you can contact us by phone (613-548-4419×1215) or email (qpond@queensu.ca).
By joining this research registry, you will help us better understand the variability among persons with and without neurodevelopmental disorders and neuropsychiatric conditions. We hold ourselves to the highest standards in ensuring you continue to have the following rights.
What am I consenting to? * I agree to be contacted by Q-GLO/Q-POND about current studies. This is only to inform you about a study, and you are under no obligation to participate. * I agree to share the information I provide on the following forms with Q-GLO/Q-POND for the purpose of contacting me about studies and for determining eligibility for future studies.
Participation in this study will involve:
Providing contact information for yourself, and basic demographic information about you and your immediate family members who are willing to be contacted about research studies being carried out by Q-GLO/Q-POND or their collaborators. The demographic information (name, date of birth, and diagnosis) is used for the purpose of determining eligibility for a study and names are collected so that we can communicate with you about whether a particular family member would be interested in participating in a study. There is no time commitment for the
research registry, and you will be informed of the time commitment and personal involvement for any study you are invited to participate in. Potential Risks and Benefits: There are neither anticipated risks nor specific benefits from participating in these studies. However, the information you provide may lead to a better understanding of the causes and potential treatments of neurodevelopmental disorders and /or neuropsychiatric conditions and may help families in the future. You may be invited to participate in other research studies associated with this research registry which may offer compensation for participation. You will not receive results or findings as a participant in the research registry, although some studies you may be invited to participate in may provide results or findings.
Confidentiality: All personal information obtained during this study is strictly confidential and your anonymity will be protected at all times through information coding and encryption and by storing all information in locked files. Only the Principal Investigator and those working with them will have access. Your personal information will not be used for any reason other than what you have consented to or shared with anyone else without your written permission. No information that reveals your identity or the identity of your family members will be released or published without your written consent.
Your coded data may be stored in online secure databases (i.e., server or cloud provider) that meet international security and safety standards. This data may be shared with collaborators, but access to data will be strictly controlled, and permission to access will be granted only to approved researchers. Researchers will not be given any information that would allow them to identify you directly. Although very strict coding methods will be used, there is always a remote risk that you could be identified. However, we employ numerous safeguards to keep your information confidential.
We may disclose personal information to a law enforcement agency when required by law, to aid a law enforcement investigation, or for health or safety reasons. As examples, we may disclose in response to a court order, in the context of a specific law enforcement investigation, or when there are compelling concerns about an individual’s health or safety.
This research registry started in 2001 and participants have continued to be contacted for follow-up and invited to participate in new studies, unless they have asked to no longer be contacted. This research registry will continue to recruit new participants and follow-up with past participants as long as Q-GLO/Q-POND is an active research laboratory. Data that is collected will be retained for at least 5 years after the publication of results.
Queen’s University and Affiliated Teaching Hospitals Research Ethics Board (HSREB) may require access to study-related records to monitor the ethical conduct of the research.
Protection and Security of your personal information: Only the primary researchers and those working with them will have access to your family’s information. All information that you submit to this registry is encrypted with industry strength technology. Voluntary Participation: Your participation in these studies is voluntary. You can withdraw from any study at any time. You will not have your information removed from the research registry unless you request this. Your withdrawal from any study will not result in any penalties and/or loss of benefits and/or affect your future medical care and/or impact academic standing. If you want to withdraw from any study, please contact us at qpond@queensu.ca. Should you choose to remove your name from the Research Registry, all contact information and any other identifying information will be removed, and data collected will be retained for analysis.
Once data has been anonymized and analyzed, you cannot ask to remove the data as it will not be possible to identify it for removal.
This study has been reviewed for ethical compliance by the Queen’s University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board.
Sponsors/Funders:
This research is funded by Ongwanada, Canadian Foundation for Innovation, and a Special Research Fund held by Dr. Calvin Sjaarda.

If at any time I have further questions, problems, or adverse events, I will contact:
Q-GLO/Q-POND Research Team at 613-548-4417×1215 or Dr. Calvin Sjaarda at 613-548-4419×1200.
The Queen’s University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board (HSREB) at 1-844-535-2988 (Toll free in North America) or clarkaf@queensu.ca. For research conducted outside of North America use: 1-613-533-2988. If non-English speaking participants wish to contact the Chair for ethics concerns, translation assistance may be necessary, as the REB Chairs communicate in English only.