By Julie Levitan, Communications Coordinator
In honor of Hypoxic Ischemic Encephalopathy (HIE) Awareness Month, we are sharing some critical insights from our upcoming Community Voice Report produced in partnership with Hope for HIE. Earlier this month, community leaders and administrators of the Hope for HIE Support (Hypoxic Ischemic Encephalopathy) Parent Forum allowed TREND Community to analyze 7 years’ worth of real-world conversation data. From this wealth of evidence, our unique analytics engine and team of researchers have been able to identify the predominant disease burdens, management strategies, and unmet needs for this HIE community.
While we are still working to understand and compile the extensive data, certain topics have already emerged as major areas of interest and need. These include:
• Seizures (18543)
• Breathing and Eating Issues (15986)
• Gastrointestinal Issues (11631)
The corresponding numbers represent the combined references to issues related to these topics. In our complete Community Voice Report, we will identify the specific symptoms and management strategies that comprise these larger categories.
Our analysis also indicated the community’s desire for further research into the initial injuries that result in Hypoxic Ischemic Encephalopathy. This topic is a major area of interest and urgent unmet need for the community, as it affects everything from early intervention treatment plans to prevention of future cases.
This marks the beginning of a partnership between TREND Community and the individuals and caretakers living with Hypoxic Ischemic Encephalopathy.