Hope for HIE was recently awarded the NICU Parent Network Innovation Award for our Halo of Support longitudinal model for clinical trials at the NPN Leadership Summit held February 14 in Cleveland, Ohio.
Matt Kegyes, Board of Directors Treasurer (pictured in the middle), attended the awards ceremony on behalf of Hope for HIE, networking with attendees, and celebrating the NICU Parent Network community, which Hope for HIE has been a long-standing member.
The Halo of Support model is a comprehensive framework that combines Hope for HIE’s support programs and services, led by credentialed, experienced staff members, and applies best practices in community engagement, communication and health literacy to families enrolled in clinical trials.
Through this dynamic program, families are supported at the point of diagnosis, whether or not they decide to consent into the available trial. For families who do consent and enroll, they receive specific information regarding the trial, follow-up activities, reminders, check-ins and have a third-party feedback mechanism to lean into, including support from social work, child life, and peer support mentors who have also enrolled children before in clinical trials.
For the hospitals and study sponsors, Hope for HIE provides extensive input and engagement throughout the clinical trial planning process, enrollment, and follow-up. This ensures that a consistent level of support and communication is provided to families, as well as the hospitals participating, to create a halo of support for the family, and tackle known barriers in neonatal and pediatric clinical trials, such as attrition, accessibility and equity in enrollment, and feasibilty of trial design.
ReAlta Life Sciences is Hope for HIE’s first Halo of Support partnership, working with the company to consult on trial design, quality of life measurement, core outcome measures of what is really important to families, consenting and communciation best practices, follow-up support and regulatory advocacy for the now enrolling phase II STAR study clinical trial. This clinical trial is testing a novel peptide called RLS-0071 in conjunction with therapeutic hypothermia for babies born with moderate to severe neonatal HIE.
In addition to the STAR study, elements of the Halo of Support model are being used in the COOL PRIME study — a comparative effectiveness study for mild HIE and therapeutic hypothermia. Hope for HIE has nearly a dozen relationships with researchers developing therapeutics to enter the clinical trial pipeline for HIE that utilize elements or the full framework.
Learn more by visiting our Clinical Trials & Research Hub!
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