Did you know there are currently ZERO published long-term follow up guidelines for neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy?
That's about to change. Members of Hope for HIE's Medical Advisory Board, and the greater neonatology and pediatric neurology community are coming together to tackle this lack of important care for HIE. First, we need to know what care looks like around the world, and from the patient-family and provider sides.
How can you help and get involved? Check out the letters and links below to participate. Note: this is intented to capture GLOBAL perspectives!
Dear Parents:
We are reaching out because we are recruiting volunteers for a research survey to learn more about the experiences of parents of babies who have had hypoxic ischemic encephalopathy (HIE) or neonatal encephalopathy (NE).
As you may know, there is no standard protocol to tell us which is the best way to follow up babies who have had hypoxic ischemic encephalopathy (HIE) or neonatal encephalopathy (NE). Our goal is to improve developmental outcomes and we are very interested in your opinion.
The survey will take approximately 10 minutes to complete.
If you are interested in learning more or completing the survey, please click the following link or scan the QR code.
If you have questions about the study, please contact Alexa K. Craig, MD at 207-883-1414 or by e-mail at alexa.craig@mainehealth.org. If you wish to discuss your rights as a research participant or wish to speak to someone not directly involved in this study, please contact MaineHealth’s Institutional Review Board at (207) 661-4474.
Thank you for your time!
Alexa Craig
Dear Providers,
As you may know, there is no evidenced-based or consensus-based protocol for optimal follow up after NICU admission for hypoxic ischemic encephalopathy (HIE) or neonatal encephalopathy (NE). We are very interested in your practice of follow up and your recommendations for what might be considered “ideal follow up”.
The survey will take approximately 10 minutes to complete.
If you are interested in learning more or completing the survey, please click the following link or scan the QR code.
https://redcap.link/providerhie
Thank you for your time!
Alexa Craig
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