Opportunities - Patient and Family Advisory Council (PFAC) for the Perinatal Brain Injury Lab
Patient & Family Advisory Council (PFAC)
for the Perinatal Brain Injury Lab
What: The Perinatal Brain Injury Lab is run by Dr. Mary Dunbar, a pediatric neurologist and researcher at the University of Calgary. We study brain injuries that happen in fetuses, around birth, and in the first month of life. This includes hypoxic ischemic encephalopathy (HIE), stroke, meningitis, and malformations. Our goal is to advance our understanding of these conditions to better inform families and develop better prevention, screening, and treatments.
Who: Our lab is excited to recruit people with lived experience with perinatal brain injury, whether it’s a fetal diagnosis, cerebral palsy, HIE or other perinatal brain injuries.
We’re looking for 5-10 members with a diversity of lived experience and backgrounds
Why: We need a Patient and Family Advisory Council (PFAC) to ensure that the work we do is relevant to the families affected by the conditions we study
When: Monthly meetings for approximately 1 hour, plus a few additional meetings through the year
Where: Most meetings will be virtual, some will be in person in Calgary for those able to attend, travel will be reimbursed for those outside Calgary
Types of experiences available:
- advise about research projects using your lived experience (no science background needed!)
- provide feedback for grants to fund research projects (no writing experience needed)
- help with learning materials to translate knowledge to ensure they make sense
- help with running research studies that involve patient participants
What we can offer:
-Compensation of $35/hour
-Training courses available (1-3 hours) on patient engagement in research
-A way to use your experiences to improve maternal and pediatric health research
Kinds of projects wer’re working on:
-How newborn brain injuries (stroke, meningitis) are different in male and female babies
-Family centered neurodevelopment prediction in fetal brain conditions
-Algorithms to treat neuro-irritability in babies with brain injuries
-Systematic literature reviews of fetal stroke, neonatal meningitis, and perinatal stroke
WE WANT TO HEAR YOUR VOICE
For more information or to express interest:
Dr. Mary Dunbar,
pblab@ucalgary.ca
