Privacy & Confidentiality Questions

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.

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.

The CLSA only grants access to this de-identified data for ethically and scientifically approved research performed by the public sector.

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.

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.

Canadian and international researchers can apply to access your data.

However, the blood, urine or stool 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.

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 is approved, data and samples will not be released until the request is also approved by a Research Ethics Board.

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.

No, they cannot. 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 gives access to this de-identified data for ethically and scientifically approved research performed by the public sector.

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 registers, hospital procedures and other health-related records as they evolve over time. This access is strictly controlled.

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.

For questions about the study please contact the CLSA Information Line at 1-866-999-8303 or info@clsa-elcv.ca. If you have any questions regarding your rights as a research participant, please contact the Research Ethics Board associated with your Data Collection Site.