Interested in contributing to the future of IEM care? We regularly share research studies, surveys, and clinical trial opportunities relevant to our community. If you’d like to get involved, explore the latest opportunities available and see if there’s a study that’s right for you. Every study is different, and participation is always voluntary, but by taking part you may help advance research for future generations living with IEMs.
Current Research Studies:
Research opportunity: Understanding Neurodivergent People’s Experiences
If you are Neurodivergent and have accessed or tried to access Genetic Services in Australia, we would love to hear from you. This study is looking to have 30–60-minute conversations with Neurodivergent people about their experience with genetic services. For more information, visit this link: https://redcap.link/ND-XP. If you have any questions, feel free to email [email protected]
This project has human research ethics approval from The University of Melbourne (ethics ID number 33966).
Research opportunity for carriers of PKU:
Researchers at the University of Guelph are trying to better understand health outcomes and cognition in people who carry one copy of the gene for Phenylketonuria (PKU), AKA “PKU carriers.” . This study has been approved by the Research Ethics Board of the University of Guelph.If you have any questions or concerns about the research, please feel free to contact: Dr. Justine Keathley ([email protected]) Find out more about the study here.