Hope for HIE’s leadership and global community have decades of expertise in best practice development for patient advocacy involvement in clinical trials – from the TOBY and Shankaran trials to the recent completion of the HEAL study. We are experts in patient communication, navigating patient-family focused regulatory requirements and insights, and regularly consult and collaborate on various stages of research and development for scientific and therapeutic areas relating to HIE, on both the academic and industry/pharmacological sides.
Hope for HIE has been a patient advocacy partner since 2019 with the PCORI-funded multi-center Neonatal Seizure Registry project, and subsequent add-on studies, giving insights from our patient-family community, bringing expertise in patient communication strategy to disseminate results.
Hope for HIE is the patient advocacy partner for the development of a multicenter study for ReAlta Life Sciences’ promising therapeutic set to enter multicenter clinical trials in 2023, providing focus groups, core outcome measurement, and the implementation of Hope for HIE’s comprehensive Halo of Support©️ framework for the longitudinal clinical trial.
Hope for HIE is partnering with Dr. Adam Edwards and Argenica Therapeutics to bring patient-family insight in the study development process, as their novel therapeutic moves from pre-clinical work through the pathway to human clinical trials, engaging local Hope for HIE families in Australia, and the implementation of Hope for HIE’s comprehensive Halo of Support©️ framework for the longitudinal clinical trial.
Hope for HIE, as the premiere global patient advocacy organization for HIE, was instrumental in getting the upcoming COOL PRIME comparative effectiveness study for mild HIE and therapeutic hypothermia funded through PCORI, bringing lived experiences of unmet needs in the HIE community to the forefront, ensuring they are not only included, but centered and validated, serving as a longitudinal stakeholder partner.
Hope for HIE was tapped in to consult on the HEAL study during the final phase of assessment, as well as the dissemination of results. Many lessons were learned about the need to include patient advocacy input at the onset clinical trial planning, and best practices on family communication and engagement.
We’ve put together a comprehensive hub for HIE families interested in learning more about clinical trials and research studies with some of the best resources to help build health literacy, understand how clinical trials and research studies for hypoxic ischemic encephalopathy and associated diagnoses work, and links to active and upcoming trials of interest to families.
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