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JENNIFER DEGL

AUTHOR, SPEAKER, MATERNAL & NEONATAL HEALTH ADVOCATE

I am SUPER excited to share my news with you…

After over four years of doing research, analyzing survey results and writing (along with a fabulous group of NICU experts from the International Neonatal Consortium from The Critical Path Institute), I am VERY happy to report that my paper was published in the Journal of Perinatology. 

It’s called The culture of research communication in neonatal intensive care units: key stakeholder perspectives.”

You can read it by clicking HERE

It all started in a coffee shop in Mount. Kisco, NY when I met a pediatrician who now works in the pharmaceutical industry. We began to discuss ways to improve the communication between physicians, researchers, nurses and parents regarding clinical trials so that more families would consent to them- so that new safe and effective medications could be developed for premature and medically fragile babies. There have been no new medications developed exclusively for neonates in over 25 years. 

We started to discuss ways to survey parents and then decided that we should survey the physicians and nurses as well. This process took over a year and finally we were able to launch our multistakeholder survey through the International Neonatal Consortium (INC), a special focus consortia of The Critical Path Institute (C-Path). These results took a great deal of time to analyze and then the writing began. Along the way we gained more support from other members of the INC and C-Path organizations and many great representatives from the pharmaceutical industry, research physicians and nurses, bedside nurses and NICU graduate parents joined our writing team. 

Well, I don’t have to tell you that our hard work paid off because you can read it for yourself. 

If you are pressed for time, you can just read the Abstract, Conclusion and Discussion to get the main idea. It’s a long paper 🙂 

I am so proud of this work and I hope that our research encourages industry, research and bedside providers to have conversations (and perhaps develop protocols and best practices) to better communicate with each other (and parents) regarding all research done in the Neonatal Intensive Care Units (NICUs), including clinical trials. Our future babies need new medications that are safe and effective and designed for their specific physiological make-up and weight. 

Stay tuned for the follow up Editorial that should be published pretty soon. I gathered together a few NICU graduate parents to read and interpret the data from their perspectives and I am looking forward to sharing their thoughts with you very soon. 

That’s all for now. 

Oh… actually… please share this paper with anyone interested, including NICU parents, members of the pharmaceutical industry, neonatologists, neonatal and pediatric nurses, and legislators who may want to work on bills to encourage big pharma to create these new medications for babies. 

November is National Prematurity Awareness Month and November 17th is World Prematurity Day. Check back for more information on what we have going on to help spread awareness. 

Have a great day!