General Participation Questions

In order to determine how people age over time, your ongoing involvement in the CLSA is critical. We recognize that as people age, they face situations that have the potential to affect their participation. For that reason, we offer flexible participation, meaning that we provide you with options that accommodate your personal circumstances.

Your participation is very important to us. The CLSA cannot replace participants who joined the study at the start. Choosing not to take part will impact the scientific results. Less information collected by the CLSA over time influences the quality of data available for researchers and decision-makers who develop the health- and social-care policies that affect everyone.

At each interview, you will be asked questions about your health and well-being, including physical, social and emotional functioning, lifestyle and behaviours, as well as the onset of health conditions and diseases. Most of the questions you answer will be repeated across follow-ups. This allows researchers to assess how the health and well-being of participants change over time. Additional questions or tests are introduced in each follow-up to ensure the CLSA is gathering the most comprehensive data. For example, new data collection measures introduced in Follow-up 3 may include mobility trackers, sleep trackers, brain MRIs, stool collection, and additional memory tests for participants who visit Data Collection Sites. In addition, new or expanded questionnaires have been added on quality of life, sleep, nutrition, healthcare use, sexual health and family history of disease for all CLSA participants.

Participants are asked to provide information for the core study approximately every three years. This will be a telephone interview or an in-home interview and visit a CLSA Data Collection Site, depending on which part of the study you are in. You will also be invited to take part in short web survey following your main interview.

We will maintain contact with you by various means (e.g., email, letters or phone calls) to ensure that we have up-to-date contact information for you. You can also update your contact details on our website.

The CLSA occasionally provides opportunities for participants to take part in data collection outside of the main interview every three years (such as the COVID-19 questionnaires, or COVID-19 Antibody Study). These additional points of data collection are optional, and do not affect taking part in the follow-ups every three years.

The CLSA is designed as a research platform to address a wide range of research questions related to aging and the factors influencing health outcomes in older adults. Researchers must apply and be approved to access the CLSA data. They must demonstrate that their proposed research aligns with the guiding principles of CLSA data access, including protecting the rights, privacy and consent of participants, safeguarding the confidentiality and security of the data, and using the CLSA research platform optimally for research that benefits all Canadians.

For example, researchers may study:

• What are the factors that affect how adults age?
• Why do some people stay healthy as they get older and other people develop health problems?
• What changing life circumstances do people face as they get older and how do they handle them?

A description of all the projects using study data is available under Approved Projects.

Key results from projects that use CLSA data are also highlighted under News and in participant newsletters.

You will not get any direct personal benefit from taking part.

You are participating in a study that will provide improved knowledge of the aging process that will inform the development of health policies and programs that benefit you and society as a whole.

It is also possible that, someday, researchers using data and samples collected by the CLSA will lead to new opportunities for interventions and tests that could help in the management of disease or early detection of disease.

The risks of taking part in the CLSA are minimal. Certain physical measurements taken at the Data Collection Site visit have specific risks as outlined in the study information package or reviewed at the start of the interview.

Your information is stored in a de-identified fashion, meaning any information that is collected as part of the study is not stored with personal identifiers such as your name, address, or date of birth. Identifying information is kept separate from the data you provide through interviews and assessments, and it is only used by approved CLSA staff to contact you. The CLSA only grants access to de-identified data for ethically and scientifically approved research performed by the public sector.

As with all studies that collect personal information, there is a chance that third parties could get your information without permission of the CLSA research team. Study information will NOT be released by the CLSA to a third party (other than an approved researcher) unless ordered to do so by a court order or by law.

Yes, we want all types of people to participate. It does not matter if you have a health condition. We will work with you to arrange an appropriate accommodation that will allow you to participate.

Staying in touch with you is extremely important to us. If your contact details change, you can let us know by phoning our toll-free helpline at 1-866-999-8303, emailing us at info@clsa-elcv.ca , or updating your contact details on our website.

Information already collected from you continues to be part of the CLSA database and will be kept for research purposes.

Another person, such as your spouse or adult child, who knows you best, may act as your research proxy and answer questions on your behalf. We have developed a separate consent process for identifying this person.

All research conducted by the CLSA occurs in the public domain with funding support from federal and provincial governments. Private sector researchers will not have access to data. However, they may access research results that are available as part of the public domain (i.e. through scientific journals) and use the knowledge to develop new products, services and technologies. They also may be involved in certain research projects, in collaboration with public sector researchers. However, even through these collaborations, they will not have access to any identifiable individual-level data.

The CLSA Data and Samples Access Committee must approve all requests from researchers from Canada and other countries to use CLSA data.