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 data collection. 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.
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.
We know that it is sometimes more difficult to participate in the CLSA because of life events, etc. We have many ways for you to continue to take part even if it cannot be through the usual telephone or in-person interviews. When you are contacted to make your appointment, please inform the interviewer of your situation and we will do our best to make arrangements for you that may allow you to continue in the study.
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.
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. You will be given a choice of options about what will happen to the information you have provided depending on your involvement in the study.
The withdrawal conversation takes approximately 2-3 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.
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 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. 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.
If you withdraw and have provided a blood, urine or stool 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, and we will destroy any samples that we have stored.