If you choose to join a research study, your research team will introduce you to a simple registration process:
- Register you in our secure research registry – We will securely record your basic information (name, address, date of birth, sex at birth, and study date) in our research registry to help us track overall participation and improve research planning.
- Assign a unique hospital number – You will receive a unique number in our hospital electronic medical record, called a medical record number (MRN). This number helps us understand who is participating in research for hospital operations and governance purposes only.
- Complete a short online survey about yourself – This survey is voluntary and confidential. Your choice will not affect your eligibility or participation in any research study. Your answers help us understand which communities are participating in research and where we can improve access. For more information, please read this FAQ.
This research registration process will help us understand who participates in research, discover new ways to support clients and families, and make sure everyone has a chance to take part in research at Holland Bloorview.
Only authorized staff who need this information to perform their duties can access it. Their access is checked regularly under the hospital’s security policies. Sometimes research teams may request access to the data to support a research study. They will only be granted access to the data if the Research Ethics Board has approved their research.
