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Maggie brings hands-on experience coordinating clinical research across both institutional and nonprofit settings. At PCORI, she managed a portfolio of comparative effectiveness and rare disease studies, guiding projects from review to post-award monitoring with a focus on health disparities and patient engagement. As the Director of Advocacy at Sick Cells, she collaborated on patient preference and health economics studies, helping shape research design to better reflect the lived experiences of patients and caregivers.

Maggie has worked extensively with research teams to ensure data is not only collected effectively, but communicated clearly and meaningfully. She has contributed to multi-site data projects and co-led the development of accessible data visualizations and reports for advocacy, public education, and policy change. At Sick Cells, she played a key role in aligning patient-centered data collection with national efforts to improve access and outcomes, particularly around new therapies.

A key part of Maggie’s work at Hope for HIE is building strong relationships with researchers and clinicians around the globe who are exploring new treatments and therapies for HIE. These connections help ensure that ongoing research stays aligned with the real-life needs and experiences of the families in our community.

Maggie also plays a vital role in introducing researchers to Hope’s “Halo of Support” approach—a model centered on supporting families with clear, compassionate communication, access to peer networks, and family-friendly environments during research participation. This approach doesn’t just benefit families; it also helps researchers by improving participant engagement, enhancing data quality, and offering insights grounded in day-to-day realities. By helping research teams understand and address the emotional and logistical needs of families—including support from child life specialists, social workers, and peer mentors—Maggie helps make participation more accessible and meaningful for everyone involved.

Maggie also plays a key role in making sure families have a direct voice in the research process. She coordinates family engagement for studies like COOL PRIME, STAR, and other upcoming trials, helping to organize advocacy panels where parents collaborate with researchers to shape study protocols. This kind of input ensures that trials are designed with families in mind—keeping things practical, respectful of their time and energy, and focused on what truly matters. By centering on parent priorities—such as tracking meaningful, long-term developmental outcomes—Maggie helps guide research in a direction that reflects the real needs and hopes of the HIE community.

One of Maggie’s key initiatives at Hope for HIE is leading the development of the HIE Registry—a vital effort to collect meaningful, consistent data that can drive better outcomes for children affected by HIE. A key focus of this work is reducing bias in data collection and developing a registry model that can scale globally, ultimately benefiting the entire HIE community.

Rather than reinventing the wheel, Maggie and the Medical Advisory Board sought an existing model that already excelled in this area, which led to a strategic partnership with the Cerebral Palsy Research Network (CPRN). While CPRN’s registry focuses on CP, it doesn’t yet include early data for children at risk for HIE—making this collaboration a great fit. CPRN already works with over 35 clinical sites and utilizes a secure data system managed by the University of Pittsburgh, providing a robust and trusted foundation.

Maggie is also working on data harmonization—using shared data elements so different registries can “talk” to each other. This makes it easier to combine information, grow the dataset, and run stronger, more meaningful studies. With the ability for both CPRN sites and others to join in, the HIE Registry has the potential to paint a clearer, more complete picture of the HIE experience and help move research—and care—forward.