New six-year phase will transform Bench to Bassinet from a large genetic discovery effort into a national longitudinal cohort designed to connect genetic findings with long-term health outcomes

CINCINNATI, July 31, 2026 /PRNewswire/ — Cincinnati Children’s has received a six-year, $38.4 million grant renewal from the National Heart, Lung, and Blood Institute to continue coordinating a national research program aimed at improving understanding and care for children and adults born with congenital heart disease (CHD).

The new award supports the next phase of the National Institutes of Health’s Bench to Bassinet Program, known as B2B CHANGE: Congenital Heart disease Advancing New understanding in GEnomics. The work builds on more than 15 years of federal investment in the Congenital Heart Disease GEnetic NEtwork Study, or CHD GENES, which has enrolled more than 14,000 people with CHD and more than 18,000 family members.

The grant runs from May 15, 2026, through April 30, 2032. It represents the third cycle of funding to the Cincinnati Children’s coordinating center team, following awards totaling $33.4 million and $21.4 million in earlier funding periods.

About congenital heart disease 

CHD affects about 40,000 infants in the United States each year and remains the most common major birth defect. The disease includes a range of structural heart problems present at birth.

Some children need surgery, catheter-based procedures, medication or lifelong monitoring. Advances in care have helped more children survive into adulthood, making long-term research increasingly important for understanding health risks and improving outcomes across the lifespan.

Going beyond genetic contributors

Earlier phases of the Bench to Bassinet program helped researchers identify genetic causes in an estimated 25% of previously unexplained CHD cases. The renewed grant shifts the emphasis from focusing on enrollment and genetic discovery to following participants over time to learn how genetic differences influence clinical outcomes, quality of life and future care needs.

“This renewal allows us to turn an extraordinary genetic discovery program into a deeper, longer-term resource for families, clinicians and researchers,” says Nicholas Ollberding, PhD, contact principal investigator for the coordinating center at Cincinnati Children’s. “By connecting genomic information with clinical follow-up, patient-reported outcomes and new biological samples, B2B CHANGE can help answer the questions families care most about including why a heart defect happened and what it may mean for a child’s health years later.”

Under previous grant cycles, Cincinnati Children’s served as the administrative coordinating center for the Pediatric Cardiac Genomics Consortium and supported large-scale recruitment, sequencing and data coordination. Those efforts generated the world’s largest genomically characterized cohort of people with CHD including conducting whole genome sequencing data on more than 16,000 biosamples and electronic health record linkage for more than 11,000 participants.

B2B CHANGE will re-engage a subset of participants for long-term follow-up, deeper clinical assessments, patient-reported measures and new biological sample collection.

Jessica Woo, PhD, will lead the B2B CHANGE Cohort and Community Engagement Core, with team members Erin Miller, MS, LGC, Dakota Campbell, and Rogerwene Gifford. The Community Engagement Core provides diverse backgrounds and perspectives ranging from cohort recruitment, community engagement, and genetic counseling, to digital communications and design. Together, this team will work to design and implement community engagement and cohort recruitment strategies across the B2B CHANGE network, engage with patient advocacy groups and CHD community members to inform protocol development, and ensure that voices from the CHD community are heard.

Michael Wagner, PhD, one of multiple principal investigators in the project, and his team will also expand and modernize the data infrastructure for CHD research. For example, Michal Kouril and Jing Chen will assist Wagner with integrating new information with existing data in the B2B DataHub, known as HeartsMart, and share with NHLBI’s BioData Catalyst platform. The coordinating center will provide access, tools, education and support so investigators across the country can use the resource for their studies.

Rachel Akers, MPH, CCDM, and her team have been managing the electronic data capture system and data processing from each of the sites since Cincinnati Children’s received the first grant in 2016 and will continue to play a vital role in this program as it moves into the next phase.

“For clinicians, the promise is more precise counseling and follow-up for patients with congenital heart disease,” says James Cnota, MD, also a multiple principal investigator at Cincinnati Children’s. “Today, children with seemingly similar heart defects can have very different outcomes. By studying genetic variation alongside long-term clinical data, this work can help move the field toward more personalized monitoring and care.”

Learn more about how to engage with the B2B program.

View original content to download multimedia:https://www.prnewswire.com/news-releases/cincinnati-childrens-receives-38-4-million-nih-grant-renewal-to-expand-landmark-congenital-heart-disease-genomics-program-302839597.html

SOURCE Cincinnati Children’s Hospital Medical Center