About the Research
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1. Improving treatment and management of PKU
High-quality and standardized data collection within The Canadian PKU Registry is key to understanding where scientific, clinical and policy efforts should be directed to improve health outcomes for individuals with PKU. The Canadian PKU Registry will serve to identify priority areas for future clinical trial development to improve health care and quality of life.
2. Building patient-oriented research capacity
The Canadian PKU Registry aims to collect data that is important and relevant to patients and families. We do this by working with Canadian PKU and Allied Disorders Inc. and with patients and family members who are part of the Registry team. This will promote research that addresses the needs of patients and families. Furthermore, we hope that patients and families will directly benefit from participation in the Registry. This includes having access to the data they’ve entered and being able to see summarized results within the Registry platform.
3. Improving rare disease networks
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The Canadian PKU Registry can facilitate communication between patients/families and researchers, health care providers, and industry partners.