About the British Columbia Pediatric Diabetes Registry
The British Columbia Pediatric Diabetes Registry (BC-PDR) was started by Dr. Shazhan Amed, a children’s diabetes doctor at BC Children’s Hospital in Vancouver, BC. Throughout this website, we will call the BC-PDR the registry.
The registry is a database that stores information from clinic visits and blood tests for children and youth living with diabetes from all over the province. It collects information to help improve care for kids with diabetes and help your child’s doctor improve the care they give. It is used by scientists to discover new things about diabetes like how well certain treatments work, new ways to give care, and better ways to teach families about diabetes.
- How will your data be used for clinical care?
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The registry will include information from your child’s medical records. This may include notes from clinic visits, blood test results, and lists of medications. It will also include personal information such as your child’s name, date of birth, and Personal Health Number (PHN).
We may also ask your child and you (or another caregiver) to fill out questionnaires. This may include questions about how diabetes affects daily life, how your child feels, any worries about diabetes, and how it impacts your family.
All of this information will be stored in the registry to help doctors and nurses better understand and care for children with diabetes. The information stored in the registry is kept private and protected just like your other medical information. Only nurses, doctors, dietitians, and anyone else who provides diabetes care in clinic, and clinic staff will see the information in the registry.
- How will your data be used for research?
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The information collected in the registry may also be used for research. This research helps doctors, nurses, and scientists learn more about diabetes in children and youth. It can lead to better care, new treatments, and more support for families living with diabetes.
We may also combine the registry with other registries from across the province that include health data. This gives a better picture of what’s working and where care can be improved for all families in B.C. This helps doctors, nurses and the people who make decisions about health care see what needs to be better, so they can improve care for kids with diabetes across the province.
Before any research can happen, it must be reviewed and approved by a special group called the Data Access Steering Committee (DASC). This group includes doctors and healthcare leaders from across B.C. They make sure the research is safe, useful, and protects your child’s privacy.
Only approved scientists can access the data, and they will only see information that does not include names or other personal details. This means we remove anything that could identify your child.The registry also shares some information — without names or personal details — with national and international diabetes research groups, like CAPACITY (Canada) and SWEET (International). This helps us learn from children in other places too.
We collect, use, and disclose your personal information only as authorized by the BC Freedom of Information and Protection of Privacy Act (“FIPPA”) for the reasons discussed above.
Questions
If you have any questions about how we collect, use, or store your child’s personal information in the registry, please contact:
Crystal Ng
Project Coordinator
crystal.ng@cw.bc.ca