Over the years, Graham’s Foundation’s mission has evolved to include advocacy on behalf of parents of preemies – behind the scenes, we’re not only championing family-centered care in NICUs but also finding the data to back it up. One area that hasn’t been thoroughly looked at is clinical trial participation in the NICU. Obviously parents need to give their consent for preemies to participate in clinical trials but as we discovered, many moms and dads don’t know much about what clinical trials are, how they work, or their purpose. In a presentation we delivered as part of the International Neonatal Consortium’s Incorporating the Voice of Families panel, we showed that more parents would be willing to consider having their preemies participate in clinical trials if they had more information. Here s just some of what we found after surveying parents of preemies in multiple countries:
Clearly there is an opportunity for more preemies to be a part of potentially life-saving and treatment-changing clinical trials in the NICU. As Graham’s Foundation president Nick Hall put it, “The premature birth of the baby is an overwhelming experience in something that most parents don’t expect. The opportunity to participate in a clinical trial, given all the parents are going through, would likely be difficult to process, understand and appreciate but we need more preemies in clinical trials to improve outcomes for today and the future. Our hope is that with more awareness and education, preemie parents will be better prepared to make the choice that is best for their baby and the future for preemies, too.”
How to best increase that awareness during what is a turbulent time and support parents of preemies for whom clinical trial participation is an option remains to be seen.