The Down Syndrome Biobank is a collaborative initiative dedicated to advancing basic science research and improving health outcomes for individuals with Down syndrome. One of the key challenges in this field is the time-intensive process of recruiting enough participants to power meaningful research. To help accelerate discovery, the Biobank collects biospecimens from individuals with Down syndrome as well as their biological parents and siblings.

Participation is designed to be flexible and accessible. Individuals ages 12 and older can enroll from home, while families with children ages 0–22 can choose to participate during scheduled visits to Cincinnati Children’s Thomas Center. By streamlining sample collection and expanding recruitment pathways, the Biobank helps reduce research delays and supports faster progress toward understanding and treating Down syndrome-specific health conditions.

This study is funded by DownSyndrome Achieves. For more information please contact us.

We are proud to lead the development of an inclusive laboratory technician training program designed for individuals with disabilities, in collaboration with Project SEARCH and the University of Cincinnati’s TAP and CEES programs. This innovative initiative combines customized curriculum, hands-on laboratory experience, and structured internships to create meaningful pathways to sustainable employment in STEM. Rooted in equity and workforce innovation, the program is designed to break down barriers to post-secondary opportunity and expand access to research careers. Participants gain technical skills, professional confidence, and ongoing support to thrive in laboratory environments—contributing to a more diverse, inclusive, and future-ready scientific workforce.

This project is supported through generous donations from the Children’s Convalescent Home.

Three distinct studies are being conducted across several aspects of navigation. Each study informs care navigation across the lifespan.

Caregiver Navigation

Caregivers play a vital role in supporting children with complex medical and developmental needs but navigating healthcare and social systems can be overwhelming. This research explores how caregivers make decisions, identify resources, and overcome barriers in accessing care. By centering caregiver perspectives, we aim to design healthcare delivery models that truly meet families where they are.

This work is currently underway but remains unfunded.

Transition Coaching

Transitioning from pediatric to adult care is a critical, and often complicated, process for individuals with spina bifida. Our research is defining the role of a transition coach who can bridge the gap between families, patients, and providers. Each stakeholder brings a unique perspective, and understanding these dynamics is key to building effective support systems.

This work is generously supported by the Rubenstein Foundation and is being done in partnership with the Spina Bifida Coalition.

Peer to Peer

Adulthood brings new challenges for individuals managing a diagnosis like bipolar disorder—especially when shifting from pediatric care to adult systems. Our team is developing a peer support model that helps individuals connect to employment resources, vocational training, community networks, and new providers. This work will inform broader care strategies and result in an implementation change package that other organizations can adopt to better support adult patients.

This work is currently underway but remains unfunded. Learn more about the Bipolar Learning Health Network.

Timely and coordinated follow-up care is essential for patients with complex medical needs—but gaps often emerge after initial visits. This quality improvement initiative focuses on strengthening follow-up care by leveraging team-based appointments, where interdisciplinary providers collaborate in real time to support patient needs. By analyzing workflows, communication patterns, and patient outcomes, the project aims to identify best practices for ensuring continuity of care after team-based visits. The goal is to reduce missed follow-ups, improve care coordination, and enhance patient and caregiver satisfaction. This work is part of a broader effort to embed systems thinking into clinical operations and create scalable models for high-quality, team-driven care.

This work is being done as part of the Quality Scholars Program at Cincinnati Children’s.