Best Practices for Obtaining Genomic Consent in Pediatric Traumatic Brain Injury Research.
Kaylee C Schnur, Eliana Gill, Alejandro Guerrero and 2 others
PMID 30829926WHAT IT FOUND
A four-step screening process and 24/7 availability of the research team achieved a 78.9% consent rate in pediatric traumatic brain injury biobanking.
Nurses and coordinators who were consistently present and trained to approach families were key to this high enrollment.
Key findings
01Of the 76 eligible families approached, 60 consented to enroll, resulting in a 78.9% enrollment rate.
02Availability of the principal investigator and clinical research coordinators, along with a structured prescreening protocol, were factors believed to contribute to the high enrollment rates.
03Registered nurses who self-selected as study champions helped identify potential participants and assisted with data collection procedures.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study was conducted at a single medical center, which limits generalizability. The sample size was small and underpowered to detect differences based on race or ethnicity, despite a trend toward non-White families being lost to follow-up. The study could not follow up with families who declined to participate to understand their reasons. Factors contributing to parent unavailability could not be fully explored due to privacy restrictions.
Declared interests
The authors declared no conflicts of interest. The study was supported by the National Institutes of Health.
The easy way to misread this
Do not interpret the 78.9% enrollment rate as evidence that this specific screening protocol will yield similar results in other settings. The study was underpowered to test why some families were not approached, and the high rate may be due to the unique availability of the principal investigator and dedicated nurse champions at this single site.