Albertans4HealthResearch.ca

The FRUITION study: Family-centered outcome prediction in fetal brain conditions
University of Calgary, University of Alberta

Background
More and more we are identifying problems of brain development before a baby is born. Doctors can use magnetic resonance imaging (MRI) pictures of the fetal brain to predict what types of challenges the baby might have. Families use this information to make critical, time-sensitive medical decisions regarding the pregnancy. However, there is limited data about how accurate these predictions are. Another issue is that in research,  a “poor outcome” may be cerebral palsy or autism, but families may not consider these “poor outcomes” at all.

Despite how important accurate prediction is for families, there is no standardized method for measuring or communicating neuro-prognosis in cases of fetal brain disorders. To address this gap we propose to collaborate with patient and family partners and diverse knowledge users to co-design a fetal neurodevelopmental prediction framework that can be used in clinical and research settings.

Study aims to be addressed in this study:
    1. To co-design a prognostication metric (a framework for estimating and communicating             what to expect) with input from diverse fetal caregivers and patient and family partners
    2. To evaluate the inter-observer reliability of prognostication using the framework

We are looking for those with lived experience of a fetal MRI for a fetal brain concern to share their insights and perspectives in the co-design of a neuro-developmental prediction framework for fetal brain disorders.

Roles and Responsibilities
This opportunity is looking for those with lived experience of a fetal MRI for a fetal brain concern to join the study in the following roles
     -a Patient and Family Advisory Council member
     -collaborate on the design and refinement of the neuro-developmental prediction                    framework
     -join as a patient research partner collaborator on a grant funding application

Time Commitment
This project aims to start in February 2025. The first meeting will be 3-6 hours to share input on the co-design of the tool (in-person or virtual hybrid). Subsequent meetings to work on refinement will be 1-2 hours each month (online) for 2-3 months, then 1-hour each month for 3 months for overview/updates.

Compensation/Reimbursement
Compensation will be offered at a rate of $50/hour.
For the in-person opportunity, travel and parking expenses will be reimbursed.

For more information or to express interest
Dr. Mary Dunbar
pblab@ucalgary.ca