Data Linkage & Secondary Use

If your project is collecting data that has the potential for secondary use and/or data linkage (e.g. with registries or administrative data), consider including provisions in your consent/assent forms and ethics application. Ethics boards will have their own guidelines for what may or may not be acceptable; therefore the following should only be used as examples of explanatory and consent language.

This study will include some or all of the following: [describe]

• Data collected during the project;

• Some data from your medical file or other personal and health information;

• Your self-reported health related data; and

• Data from other sources [if applicable, describe].

You have the option of allowing your study data to be re-used by approved researchers. Any of your personal information (i.e. your name, address, telephone number) that can identify you will be removed or changed before files are shared with other researchers. Researchers that wish to use study data must 1) have their new study approved by an ethics board; 2) sign an agreement ensuring your confidentiality and restricting data use to only the approved study.

If you agree, your study data may be linked with other data to enable further research. In this case, identifying information will be stored securely and will only be used to link your data to other datasets.

• I agree for my study data to be securely stored in controlled-access databases.

• I agree for my study data to facilitate future research. I understand that my study data may be made available to other researchers, but my identity will be protected and my confidentiality will be preserved.

• I agree for my personal identifiers to be securely store to facilitate future research and to permit linkage with other data.