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 completion of the HEAL study, and everything in between and in the future.
We are experts in patient-family communication and engagement, 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/drug and device development sides.
At Hope for HIE, our partnerships in research are grounded in integrity, authenticity, and accountability to the families we serve.
We do not participate in “checkmark engagement,” nor do we accept the “wink-wink, nudge-nudge” tokenism that too often characterizes stakeholder involvement in research. Our community deserves better—and we expect better from anyone who seeks to work alongside us.
For more than a decade, Hope for HIE has championed family-integrated care, patient-centered research, and respectful, reciprocal collaboration. When we partner in research, it is because the work has meaningful potential to advance science, improve care, and reflect the lived experience of those most impacted by HIE. We bring forward the needs, priorities, and diverse voices of our global community, and we do so with transparency, rigor, and a commitment to long-term relationship-building.
Families are not a box to check. Their perspectives are not an optional add-on. Their trust is not something to be leveraged for funding or optics.
Their expertise is essential—and we protect it fiercely.
We will continue to engage only in research partnerships where we and our families are respected as true collaborators, the value of our collective experience is honored, and the work aligns with our mission to improve outcomes, strengthen care, and accelerate discovery across HIE.
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 is partnering with Neuren Pharmaceuticals to bring patient-family insight in the study development process, as their work in NNZ-2591 moves to explore neonatal HIE as an indication in clinical trials,
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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