BLOG

Long-Term Follow-Up Workshop at INBC

March 12th, 2025  | Advocacy  | News

READ MORE

Hope for HIE hosted its second workshop at the 2025 International Newborn Brain Conference in February, as a part of the process to develop long-term follow-up guidelines for neonatal Hypoxic Ischemic Encephalopathy, as no guidelines currently exist. Children with HIE often are only followed closely until age 2 or 3, and many will have developmental impacts into childhood and beyond.

The workshop brought together over 150 clinicians — physicians, nurses, therapists, family partners, researchers and community members to start asking questions to generate consensus and a place to start. Results of this workshop will be publicly available with a manuscript planned to be published, and a global multidisciplanary workgroup will be formed to move forward the work.

Medical Advisory Board members Drs. Alexa Craig and Danielle Barber, Dr. Andrea Pardo from Lurie Children’s and Dr. Nina Natarajan from Seattle Children’s who also planned and facilitated the Neonatal SIG workshop, and 13 table facilitators joined Gina Abraham and Betsy Pilon from Hope for HIE’s staff in making this a success.

In addition to hosting the lunch workshop, Hope for HIE was well-represented throughout the conference:

• The HIE Registry core workgroup team was able to come together in person for the first time, as we gear up to officially launch the pilot at two sites and with our global families.
• Betsy Pilon co-led a workshop with Dr. Lauren Treat about high-stakes conversations in the NICU, and co-led a discussion session with Dr. Terrie Inder and Dr. Geraldine Boylen about working with industry partners to advance research.
• Hope for HIE staff and Medical Advisory Board members were represented in several posters — two from the first workshop held at the Child Neurology Society Neonatal SIG meeting.

Support to make the workshop possible was provided by two Partners in Hope:
Realta Life Sciences & Dompe.