Memory Study Questions

As with all studies that collect personal information, there is a remote possibility that third parties such as an insurance company or employer could access the information you have provided without permission of the CLSA. Many levels of safeguards have been put in place to reduce this risk.

All identifiable information will be kept in a secure database with a unique study number at McMaster University and will only be used to contact you. The information that you provide for us, without your name or contact information, will be stored in a secure database at McMaster University. Data collected by interviewers are transferred to the McMaster database over secure, encrypted connections.

All CLSA staff will sign an agreement to protect your privacy and confidentiality.

The CLSA Memory Study data will not be available to other researchers through our general study data access processes. Any requests to access the CLSA Memory Study data will need to be submitted to and approved by the CLSA Memory Study principal investigators. Researchers using data from the CLSA Memory Study will not be provided with any identifying information.

Records identifying you as a participant in the CLSA Memory Study will be kept confidential and, to the extent permitted by the applicable laws, will not be disclosed or made publicly available, except as described in this document. If required, direct authorized representatives of the following organizations may look at your original identifiable data to check that the information collected for the study is correct and follow proper laws and guidelines:

The research ethics boards oversee the ethical conduct of this study in each province.

The CLSA Memory Study will take approximately two years to complete, and the results should be known in approximately three years.

The purpose of this research study is to determine whether information that is collected through CLSA interviews can be used to correctly identify individuals who have memory problems and individuals without memory problems.

Approximately 600 participants from the 11 CLSA Data Collection Sites in Canada will take part in the study.

It is not possible to sign up for the CLSA Memory Study. Only eligible participants will be invited to take part.

No, participants in the study will not receive a medical diagnosis. If the study clinician identifies a potential concern about your memory, you will be given a letter about the study and some of your individual results that you can share with your family doctor.

If you do not have a family doctor, the study clinician will provide you with some suggested resources regarding the potential concern about your memory.

You will not get any direct personal benefit from taking part in the CLSA Memory Study.

Your participation in the CLSA Memory Study will contribute to potentially developing new ways to identify individuals with memory problems, even if they have not been diagnosed by a physician.

There are no direct medical risks associated with participation in this study.

Some participants may feel tired or frustrated during the medical assessment with the study clinician. If you need a break during the medical assessment, please ask the study clinician.

Some participants may feel worried about if the study clinician will identify a potential concern about their memory. Participants identified as having a potential concern about their memory will have an opportunity to speak with the study clinician to discuss their concerns.

The data collected in the CLSA Memory Study will be used to develop a method of identifying CLSA participants who have memory problems and individuals without memory problems in the main CLSA study.

If the results of this study are published, your identity will remain confidential. It is expected that the information collected during this study will be used for analyses and will be published and presented to the scientific community at meetings and in journals.

Your agreement to participate in the CLSA Memory Study is entirely voluntary. Your decision to participate in the CLSA Memory Study does not affect your ongoing participation in the main CLSA study that you have participated in since 2012-2015.

You can choose to end your participation in this research (called withdrawal) at any time without having to provide a reason. If you choose to withdraw from the study, you are encouraged to contact the research team.

If you decide to leave the study, we will stop contacting you for the CLSA Memory Study.

You may ask that the information that was collected about you not be used for the study. However, once the study results have been released, we will not be able to remove it from our datasets. If you have any questions about the CLSA Memory Study, please contact us.

You will be told in a timely manner about new information that may be relevant to your willingness to stay in this study.

You have the right to be informed of the overall results of this research once the entire study is complete. As a person taking part in the main CLSA study, you have chosen if you would like to be sent regular updates about the study progress through electronic or mailed newsletters. The results of the CLSA Memory Study will be shared with all CLSA participants through those newsletters. Information about ongoing research, the research team, and general study results will be posted on the CLSA website.

Your rights to privacy are legally protected by federal and provincial laws that require safeguards to ensure that your privacy is respected.

If you consent to participate in the CLSA Memory Study, you do not give up any of your legal rights against the research team, the Public Health Agency of Canada, or involved institutions for compensation, nor does this form relieve the research team, the Public Health Agency of Canada, or their agents of their legal and professional responsibilities.

Each research ethics board has reviewed this study. The research ethics boards are responsible for ensuring that participants are informed of the risks associated with the research, and that participants are free to decide if participation is right for them. If you have any questions regarding your rights as a research participant, you may contact the Research Ethics Board associated with your Data Collection Site.