FAQs

About the Study

What is the Canadian Longitudinal Study on Aging (CLSA)?
  • The Canadian Longitudinal Study on Aging (CLSA) is a Canada-wide study that looks at health and aging over a 20-year period. People between the ages of 45 and 85 were recruited between 2010 and 2015 to take part.
  • The study team collects a wide range of information about people’s health as they age, including physical, emotional and social health functioning, as well as the presence of health conditions and diseases.
  • CLSA participants fall into one of two different groups. Some people will be contacted for a telephone interview, while others will be asked to be part of a home interview as well as a visit to a Data Collection Site in their area.
I am a participant in the study. Why is my continued participation important?
  • 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 leave the study. Choosing not to take part will have an impact on the scientific results. Less information collected by the CLSA influences the quality of data available for researchers and decision-makers who develop the health- and social-care policies that affect everyone. 
What kind of questions will be asked?
  • 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.
How often will I have to provide information?
  • Every three years, participants will take part in a telephone interview, or in an in-home interview and visit a CLSA Data Collection Site, depending on which part of the study you are in.
  • 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.
How will the information be used?

The information will be used by many researchers. 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?
Will I be informed about research projects using CLSA data?
  • The CLSA will keep a list and description of all the projects using study data and samples on its website and we will highlight key results in our newsletters.
  • You can also call the CLSA toll free at 1-866-999-8303 for any further questions or clarifications regarding the projects.
What are the benefits of continued participation?
  • 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.
What risks are involved in this research?
  • The risks of taking part in the CLSA are minimal.
  • 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.
Who is funding the study?

The CLSA is a strategic initiative of the Canadian Institutes of Health Research (CIHR). Support for the study has been provided by the Government of Canada through the CIHR and the Canada Foundation for Innovation, as well as the provincial governments of British Columbia, Alberta, Manitoba, Ontario, Quebec, Nova Scotia, and Newfoundland and Labrador.

Will CLSA data be used by private sector companies?
  • 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.

Your Ongoing Participation

I have been diagnosed with a major health condition; can I still continue to be in your study?

Yes, we want all types of people to participate. It does not matter if you have a health condition. As long as you are able to complete a telephone interview, we would like you to take part.

I am overweight/smoke cigarettes/drink alcohol/take prescription or non-prescription drugs. Do you still want me to continue to take part in the study?

Yes, we are studying people’s lifestyle and health as they age and we will ask you questions about this. If any of the questions make you feel uncomfortable, you may choose not to answer and to move on to the next question. We will not offer advice or make any judgment about any aspect of your health or lifestyle.

What happens to the information about me if I lose my ability to make decisions for myself as I get older?
  • Information already collected from you continues to be part of the CLSA databases and will be kept for research purposes.
  • Another person, such as your spouse or adult child, who knows you best, may answer questions on your behalf. We have developed a separate consent process for identifying this person.
I have a hearing/visual/physical impairment. Will I still be able to continue participate in the study?
  • Yes, when you make your appointment, please inform the interviewer of your impairment and we will do our best to make arrangements for you.
I have recently moved. How can I update my contact information?
  • 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.

Consent & Withdrawal

What do I do if I decide I no longer want to be part of the CLSA?
  • Your participation in the CLSA is voluntary. At any time, you can decide to withdraw from the CLSA. You can do this by phoning our toll-free helpline at 1-866-999-8303, emailing us at info@clsa-elcv.ca , contacting a data collection site directly, or mailing us an indication of your choice to withdraw to: McMaster University, MIP Suite 309A, 1280 Main St. W., Hamilton, ON, L8S 4K1.
  • However, your participation is very important to us. The CLSA cannot replace participants who leave the study. If large numbers of participants choose not to take part, it will impact the scientific results and the quality of data available to researchers and decision-makers who develop health- and social-care policies.
  • If you decide to withdraw from the study we are required to review your withdrawal options with you. The options that are reviewed will include details about what you would like to happen to the information you have already provided.
What are my withdrawal options?
  • When you withdraw from the CLSA, you are immediately removed from our ‘active’ participant list in our database. You will no longer be contacted on the phone, or asked to provide any additional information. Depending on your involvement in the study, you are given a choice of options, briefly detailed below, about what will happen to the information you have provided:
    • Option 1: the information you have contributed so far remains as part of the study, and can be used by researchers. We will continue to link your information to your provincial health records, if you agreed to give us that information.
    • Option 2: the information you have contributed so far remains as part of the study, and can be used by researchers, but we will no longer be able to link your information to your provincial health records (if you agreed to that option).
    • Option 3: the information you have contributed so far will be permanently de-linked from your directly identifiable personal information (name, address, contact information) but will remain as part of the study, and can be used by researchers. Only your postal code will remain as part of the study data. We will no longer link your information to your provincial health records (if you agreed to that option).
What does it mean to ‘de-link’ my data?
  • We permanently destroy the link between your personal identifying information (your name, address, phone number) and the information, or data, collected by the CLSA. Only your postal code will remain as part of the study data, to allow us to understand the geographical distribution of CLSA participants at the time of recruitment.  No one will be able to connect you to the data. We keep a limited amount of identifying information linked to a new ID number, so that we have a record of your participation and that you chose to withdraw.
How long will it take to withdraw from the study?
  • The withdrawal conversation takes approximately 10 minutes. Immediately after that conversation, you will be removed from our ‘active’ participant list, and will no longer be contacted by the CLSA. A letter will be sent to you indicating the withdrawal option you chose, for your records.

I just want to stop being a part of the study, but I don’t have time to talk about it. What will happen then?
  • If you do not want to discuss the different options available for withdrawal, then we will apply a default option. The default option is different depending on your involvement, and is broadly described below:
  • Default option: the information you have contributed so far will be permanently de-linked from your directly identifiable personal information (name, address, contact information) but will remain as part of the study, and can be used by researchers. Only your postal code will remain as part of the study data, to allow us to understand the geographical distribution of CLSA participants at the time of recruitment. We will no longer link your information to your provincial health records (if you agreed to that option). You will be removed from our participant list.
  • We are required by the Research Ethics Boards to have a plan of what to do with your information if you do not choose to go through the options. We highly recommend that you take the time to review all of the options before you complete your withdrawal.
What about if I have provided a blood and/or urine sample? What happens to that when I withdraw?
  • If you withdraw, and have provided a blood and/or urine sample to the study, you can choose whether those samples will be permanently de-linked from your directly identifiable information along with the rest of your data. The samples will be kept as part of the research data in the study or you can request that the samples be destroyed.

Privacy & Confidentiality

How will information about me be managed and kept safe?

The security and confidentiality of your data are our top priorities and many safeguards have been put in place to reduce this risk.

  • Your name, address and phone number will be kept in a secure database with a unique study number at McMaster University and will only be used to contact you.
  • The rest of the study information, without your name and contact information (i.e. de-identified), will be stored in a separate secure database at McMaster University.
  • Your de-identified study information will also be stored on a secure computer at McGill University for analyses by researchers.
  • Access is kept to a minimum. The computers that hold your information are protected by industry-strength firewalls.
  • All CLSA staff will sign an agreement to protect your privacy and confidentiality.
  • Your 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.
Who will have access to my data?/ Who will have access to my data and samples?
  • Only a limited number of key CLSA personnel will have access to your identifiable information such as your name, address, telephone number, etc. This information will not be communicated to researchers applying to use CLSA data. Only designated CLSA personnel will be able to contact you for follow-up interviews and appointments.
  • Researchers can apply to access your data.
  • International researchers may apply in collaboration with Canadian researchers. However, the data and/or blood and urine samples must be analyzed in Canada.
  • Private sector researchers will not have access to your individual level data. However, they may be involved in certain research projects, in collaboration with academic researchers. Even through these collaborations, they will not have direct access to your data.
How will other researchers gain access to the study data?
  • The CLSA Data and Sample Access Committee must approve requests from researchers from Canada and other countries to use the CLSA data.  Even if a request if approved, data and samples will not be released until the request is also approved by a Research Ethics Board.
How long will the CLSA keep information about me?
  • The CLSA began recruiting people in 2010.
  • The CLSA will collect information from you every three years until 2033 or death.
  • Once the information period is complete, your contact information (name, address, phone number) will be destroyed.
  • Data will be kept and used for research for another 25 years after 2033.
  • At the end of the CLSA, all the data will be destroyed or disposed of according to the recommendation of an ethics board.
Can insurance companies, drug companies, employers, or my relatives find out about the results of research on my information?
  • No, they cannot. Your information is stored in a de-identified fashion, which means any information that can identify you, such as your name, address, or date of birth, is separated from your data and stored apart from the rest of your data. We will only grant access to this de-identified data for ethically and scientifically approved research into the aging process performed by the public sector.
How will you access my health information?
  • If you agreed to give the CLSA your health card number, we will access health information from a number of sources such as death records, cancer registries, hospital procedures and other health-related records as they evolve over time. This access is strictly controlled.
What happens to information about me if I die while I am still a participant in the CLSA?
  • Information collected about you up until the time of your death will remain part of the CLSA databases and will be kept as part of the data for future research.

Telephone Interviews only

How long is the telephone interview?

The telephone interview may be completed in two different parts. Part 1 may take up to 75 minutes and Part 2 may take up to 45 minutes. On average, it takes participants 100 to 120 minutes to complete an entire interview.

Do I have to answer ALL the questions?
  • No. If there is a question you are unsure about or uncomfortable with, please discuss it with the CLSA interviewer. You do not have to answer any questions that make you feel uncomfortable.
Who will call me?
  • A trained CLSA interviewer will call you for the interview.
What if I have to reschedule my interview?

If you have to reschedule your interview, please call us as soon as possible on our toll-free line 1-866-999-8303 or email us, info@clsa-elcv.ca.

Home Interviews & Data Collection Site Visits

Do I have to provide ALL of the measurements, or answer ALL of the questions?
  • No. If there is a test you are unsure about or uncomfortable with, please discuss it with the CLSA staff at the Data Collection Site. You do not have to answer any questions or have any testing you are uncomfortable with.
Who will come to my house?
  • A trained CLSA interviewer will come to your house. They will carry a CLSA identification badge and will call you in advance to make arrangements for the home visit at a convenient time.
I use a wheelchair. Does that matter?
  • No, our Data Collection Sites are fully accessible and will accommodate your wheelchair. We do not supply wheelchairs, so if you need assistance to walk please bring the assistive device that you need with you. We will not ask you to undergo any tests that will cause you difficulty.
Where is the Data Collection Site?

There are 11 Data Collection Sites across the country as follows: Victoria, Vancouver, Surrey, Calgary, Winnipeg, Hamilton, Ottawa, Montreal, Sherbrooke, Halifax and St. John’s.

How long will my visit last at the Data Collection Site?
  • A typical visit to a Data Collection Site lasts approximately 2 ½ hours.
Will I receive information from the tests done in the CLSA?

The following physical test results and measurements will be returned to you following a visit to the Data Collection Site:

  • Blood Pressure
  • Hearing
  • Vision
  • Body Mass Index
  • Waist-to-Hip Ratio
  • Lung Capacity
  • Bone Mineral Density

It is important that you understand that your visit to a CLSA Data Collection Site does not replace a visit to your doctor or other health-care provider. Results will not be sent to your doctor or other healthcare provider by the CLSA. However, if during your visit to the Data Collection Site, your interviewer perceives a potential health problem, we will get in touch with you.

What if I have to reschedule my appointment?
  • If you have to reschedule an appointment, please call your Data Collection Site or email us at info@clsa-elcv.ca.
What is the telephone number for my local Data Collection Site?

Please click on your local Data Collection Site below to get the telephone number: Victoria Vancouver Surrey Calgary Winnipeg Hamilton Ottawa Montreal Sherbrooke Halifax St. John’s

Why am I being asked to give blood and urine samples?
  • Simply speaking, these samples will be used to measure how your body is working and how it changes over time. For example, your white blood cell count can be measured in your blood and allows researchers to understand the body’s potential to fight infection.
  • Because genes are thought to play an important part in how we age, your blood samples and the cells within them will be used to learn about the role of genes in health, disease and aging.
  • Results of blood and urine tests (including genetic tests) will be used for research purposes only.
What will I have to do if I agree to donate blood and urine samples?
  • If you agree to give a blood and urine sample, you will need to provide about 50 mL (about 3 tablespoons) of blood and provide a 10 mL urine sample during your visit to the Data Collection Site.
How will blood and urine samples collected from me be managed?
  • The samples will be labelled with a unique study number, not your name, at the time of collection.
  • They will be stored in special storage tanks to protect them for a long period of time for future analyses. These tanks are kept in a secure space at McMaster University that is electronically monitored 24 hours a day. These samples are labelled with a unique code and no identifiable information is recorded on the tube.
What if I don’t want to give blood or urine?
  • Providing the blood and urine samples is optional, but is very important to the overall understanding of healthy aging. You may opt out of providing samples and still participate in the study.
What if my results are not "normal"?

If any of the physical test results and measurements returned to you are outside of what is considered to be a normal range, you will be advised on the report you receive from the Data Collection Site and it will be recommended that you visit your doctor or other healthcare provider to verify and discuss the information.

Will you screen me for diabetes/breast/prostate/bowel cancer, etc.?
  • No, we will not carry out any kind of screening for health conditions. If you have specific health concerns, you should discuss them with your family doctor.
I am uncomfortable about removing my clothes. Can I still take part?
  • Yes, you can still take part. For some of the measurements we will need you to be in bare feet or wear a gown. We will also request that you roll up your sleeve so that we can take your blood pressure. For the waist and hip measurements you will not have to remove any clothing; however, it will be necessary to position the tape close to your body in order to obtain an accurate measurement.
  • If any test makes you uncomfortable, you can simply ask us not to do it.
Will you release results to my doctor or health-care provider?
  • The CLSA will not send any results directly to your doctor or other health-care provider. You are free to share the report you receive from the Data Collection Site visit with your doctor or other health-care provider if you so choose.
Can I receive additional test results?
  • You will not receive any other tests results including genetic tests. This is because many of the tests are exploratory and do not currently have a clinical use for health care or because it is not feasible. It is important that you understand that the tests conducted are for research purposes only, and the data have not yet been checked for quality or interpreted.
What if the test results from my Data Collection Site visit differ from the results I have received from my doctor?
  • Measurements taken at the Data Collection Site are collected as part of a research study, and have not yet been checked for quality. Many test results require further analysis and interpretation to be clinically useful, which will be performed at a later time. Results are not a clinical diagnosis and do not replace a visit to your doctor or health-care provider. If you receive a result that is outside of the normal range, it will be suggested that you visit your doctor or health-care provider to verify and talk about the results.

Transportation and Parking

Is there parking at the Data Collection Site?
  • At the home visit, the CLSA interviewer will make an appointment with you for your Data Collection Site visit and will provide you with all the necessary information about the location, transportation and parking.  A map of the locations of other nearby parking lots will also be available.
Is the Data Collection Site accessible by public transit?
  • The information letter, given to you at the home visit, will provide information about bus stops and/or metro or subway stops for your local Data Collection Site.
Can someone come with me, and will you pay their travel expenses?
  • You can certainly have someone accompany you to the site. Upon completion of your visit, you will be reimbursed $30 for your travel expenses, regardless of the number of people who accompany you.
Is there disabled parking?
  • When you book your appointment with one of our research interviewers, please advise him/her if you require a disabled parking spot. They will discuss the possibilities with you.