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TITLE: UBC Hospital Clinic for Alzheimer and Related Disorders (UBCH-CARD) Registry Database for Future Clinical Studies
PRINCIPAL INVESTIGATOR: Dr. Robin Hsiung, MD MHSc FRCPC FACP FAAN
Ralph Fisher & Alzheimer Society of BC Professor
Division of Neurology, Dept. of Medicine
University of British Columbia
Email: robin.hsiung@ubc.ca
Phone: (604) 822-3610
SUMMARY:
The purpose of this initiative is to create a registry of people who are interested in participating in currently enrolling or future studies. This regsitry also aims to determine whether you may be a possible candidate for one of the research studies currently enrolling at the University of British Columbia Hospital (UBCH) Clinic for Alzheimer and Related Disorders and related clinics.
Our research group is often approached by members of the public who would like to participate in research focusing on dementia. Sometimes we do not currently have any studies enrolling that would be suitable for that person; however, in the future there may be studies that would be appropriate for them. By creating a research registry we can re-contact people who have expressed an interest in participating in research.
Many of our studies also have entry criteria based on the questions included below. It is helpful to be able to determine whether a potential participant may be eligible based on that entry criteria, before they take part in a full screen for the study.
WHAT ARE THE POSSIBLE RISKS AND/OR BENEFITS?
Participation in this registry involves the potential risk of breach of confidentiality of your data that is stored in the database. Your data will be assigned a unique number and all personal identifiers will be removed whenever the data is downloaded to reduce this risk.
There are no direct benefits to you from participating in this registry. However, by registering, you may be informed of possible studies to participate in that you would not have otherwise have learned about.
HOW WILL MY TAKING PART IN THIS REGISTRY BE KEPT CONFIDENTIAL?
Your confidentiality will be respected. However, research records and health or other source records identifying you may be inspected in the presence of the Investigator or designate and by representatives of UBC's Clinical Research Ethics Board for the purpose of monitoring the research. No information or records that disclose your identity will be published without your consent, nor will any information or records that disclose your identity be removed or released without your consent unless required by law.
You will be assigned a unique number as a participant in this registry. This number will not include any personal information that could identify you (e.g., it will not include your Personal Health Number, SIN, or your initials, etc.). Only this number will be used on any research-related information collected about you during the course of this registry, so that your identity will be kept confidential. Information that contains your identity will remain only with the Principal Investigator and/or designate. The list that matches your name to the unique number that is used on your research-related information will not be removed or released without your consent unless required by law.
Your rights to privacy are legally protected by federal and provincial laws that require safeguards to ensure that your privacy is respected. You also have the legal right of access to the information about you that has been provided to CREB. if need be, an opportunity to correct any errors in this information. Further details about these laws are available on request to the research team.
WHAT HAPPENS IF I DECIDE TO WITHDRAW MY CONSENT TO PARTICIPATE?
You may withdraw from this registry at any time without giving reasons. If you choose to enter the registry and then decide to withdraw at a later time, you have the right to request the withdrawal of your information collected. If you would like to request the withdrawal of your data, please let the principal investigator of the registry know.
YOUR PARTICIPATION IS VOLUNTARY:
Your participation is voluntary. You have the right to refuse to participate in this registry. If you decide to participate, you may still choose to withdraw from the registry at any time without any negative consequences to the medical care, education, or other services to which you are entitled or are presently receiving.
Please review the the information provided here carefully when deciding whether or not you wish to be part of the research and agree only if you accept being a registry participant.
WHO DO I CONTACT IF I HAVE ANY QUESTIONS OR CONCERNS ABOUT MY RIGHTS AS A PARTICIPANT?
If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this registry, contact the Research Participant Complaint Line in the UBC Office of Research Ethics at 604-822-8598 or if long distance e-mail RSIL@ors.ubc.ca or call toll free 1-877-822-8598. "Please reference the study number [H25-00399] when calling so the Complaint Line staff can better assist you.
By completing the questionnaire, you are consenting to participate in this research registry.