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Dr. Beth Potter, PhD, MSc

Inform Rare

 Canadian Inherited Metabolic Diseases Research Network (CIMDRN)

Speaking Engagement:

Bridging Research, Industry, and Care: Advancing Clinical Trials Access for Allied Disorders

Defining What Matters: Core Outcome Sets in PKU Research

  • At: Building Bridges
  • In: Calgary, Alberta
  • Scientific Session
    • Date: Friday Aug 22
    • Time: 10:00 AM

Exploring the PKU Canadian Patient Registry

  • At: Building Bridges
  • In: Calgary, Alberta
  • Scientific Session
    • Date: Friday Aug 22
    • Time: 3:15 PM

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Professor in the School of Epidemiology and Public Health at the University of Ottawa, where she has been a faculty member since 2007. She holds a PhD in Epidemiology from Western University and an MSc in Applied Human Nutrition from the University of Guelph.

Dr. Potter’s research focuses on improving health care and outcomes for children with rare genetic diseases, particularly inherited metabolic disorders. Recognizing the challenges in studying rare conditions due to small patient populations, her work emphasizes multi-centre collaboration and the development of research infrastructure to support meaningful, patient-informed studies. Her research is co-led by patient partners, healthcare providers, methodologists, and policy makers, and prioritizes high-impact questions using outcomes that matter to families and clinicians.

She leads INFORM RARE and the Canadian Inherited Metabolic Diseases Research Network (CIMDRN)—two pan-Canadian initiatives using observational studies and clinical trials to evaluate interventions and family-centred health services. Dr. Potter is also active in research on newborn and prenatal screening.

At Building Bridges, Dr. Potter will share insights into the development of Core Outcome Sets (COS) in Phenylketonuria (PKU)—a global initiative aimed at standardizing outcomes in PKU research. Developed with international stakeholders, including CanPKU+ leadership member Nicole Pallone, this work supports stronger evidence, more relevant trials, and better care and policy for individuals with PKU.

In addition to her research, Dr. Potter teaches courses in epidemiology and survey methods and supervises graduate students in Epidemiology and Population Health.