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Mobilizing Efforts for Pediatric Heart Disease Research

Pediatric cardiomyopathy is a rare disease, affecting only 12 out of every one million children. Meet Hana, a vibrant 7-year old who is one of those children with a diagnosis of dilated cardiomyopathy. Hana’s rare condition causes the chambers of her heart to enlarge, making it difficult to pump blood effectively. When her heart struggles, Hana receives world-class care at the Johns Hopkins Children’s Center. As Hana explains in her own words, “My old heart isn’t pumping correctly, and that’s why I have this machine.”

How a Little Voice Quickly Mobilized a Big Movement

The caring nurses at Johns Hopkins Children’s Center formed strong bonds with Hana and quickly discovered one of her secrets for staying positive: listening to music by Taylor Swift. During a prolonged hospitalization in the winter months leading up to a National Football League (NFL) playoff game in Baltimore, the nurses took an additional step in caring for Hana, by recording a video cheering for a visit from Hana’s favorite artist during the big game. Local news outlets covered Hana’s excitement with headlines like “Adorable Pediatric Heart Patient Super Excited for Taylor Swift to Come to Baltimore.” The video gained momentum, with AWS healthcare teams and Johns Hopkins Medicine alumni amplifying the Children’s Center’s message. Soon, Hana and the nurses had gone viral. This heartwarming story highlights how a little voice like Hana’s can have a huge impact— not just on the nurses and doctors caring for her, but on a global community that, in just a few weeks, came together to raise awareness for pediatric heart disease.

How AWS has Mobilized to Support Research in Pediatric Heart Disease

In order to help advance research on pediatric heart disease for children like Hana, the same challenge that needs to be addressed is the lack of sufficient data at a single institution — which in rare diseases does not allow for powering large scale studies or lend itself to harnessing the power of AI. AWS has been working with leading researchers and clinicians to address this issue. Since 2018, the clinical and genetic data from patients with childhood cancers and structural birth defects have been made available for researchers to utilize on the NIH Common Fund’s Gabriella Miller Kids First Data hosted on AWS. It hosts the largest amount of genomics data on a cohort of patients with congenital heart disease and is supported by more than 50 partner foundations representing the pediatric cancer and structural birth defect communities. Additionally, the INCLUDE data hub on AWS houses multi-modal data on congenital heart disease and structural birth defects in patients with Downs’ Syndrome specifically.

One of the clinical champions behind both of those data-intensive efforts is Jay Storm, MD (Vice Chair of Clinical Affairs, Department of Surgery, Children’s Hospital of Philadelphia). During his residency at Johns Hopkins, Dr. Storm quickly recognized the limitation of single-site data and the lack of reproducibility in pediatric research. As a 5th-year resident at JHM, he met Adam Resnick, then a 1st-year neuroscience graduate student. During a pediatric brain tumor surgery in the operating room of the Johns Hopkins Children’s Center, the two developed a plan to collect tissue, raise awareness for reproducible science and to champion the role of technologies that could securely and rapidly aggregate data across multiple institutions. Twenty-four years later, Dr. Storm and Adam Resnick, PhD, continue to collaborate. In 2016, they co-founded the Center for Data Driven Discovery in Biomedicine (D3b) and serve as Directors. During VP Dave Levy’s keynote at the 2024 AWS Summit in Washington, DC, Dr. Resnick discussed how AI is being used to analyze genomic, clinical, and imaging data to drive discovery in pediatric diseases.

Inspired by children like Hana, and Hopkins-trained clinicians and researchers like Drs. Storm and Resnick, AWS VP Dave Levy announced a $10 million investment to accelerate pediatric health research using AI. However, as Dr. Storm highlighted in a webinar on AI in Pediatric Health & Research, data alone is not enough—there is a critical need to up-skill the workforce to effectively utilize this data. To bridge this skills gap, Amazon launched the AI Ready initiative, committing to provide free AI skills training to 2 million individuals by 2025. AWS has worked with Drs. Storm & Resnick to also offer free skills training on pediatric data portals at the AWS Skills Center Arlington.

AWS and leading research hospitals will continue to explore new possibilities and push the limits on technology to help children with these rare diseases. At this year’s AWS re:Invent, many of those ideas will be turned into reality, and more people will be able to learn about amazing children like Hana.

Learn about the Power of Data and Pediatric Heart Disease at re:Invent 2024

Since 1912, the Johns Hopkins Children’s Center has been pushing the boundaries of discovery in pediatric health and transforming care for children like Hana. Research trainees, residents and fellows from the institution have gone on to drive large scale initiatives around the globe that are seeking to speed the time to discovery. To further support these efforts, AWS and the Johns Hopkins Children’s Center are raising awareness for pediatric heart disease by offering limited-edition pins featuring artwork by Hana. These pins will initially be distributed at re: Invent 24, AWS’ premier annual conference. Join us at the Healthcare and Life Sciences Expo Pavilion in the Venetian to collect your pin, help amplify Hana’s message and learn about how you can support the mission of the Johns Hopkins Children’s Center.

“This capsule is filled with love. It reminds me love is the most powerful medicine. It cures my heart and makes me healthy again.”

Hana, Age 7
Patient with dilated cardiomyopathy

Rod Tarrago, MD

Rod Tarrago, MD

Rod Tarrago, MD, is a Principal Business Development Manager at AWS. He leads clinical informatics for academic medicine. Rod brings 15 years of experience as a chief medical information officer. Clinically, he practiced pediatric critical care medicine for 20 years prior to joining AWS.

Dr. Angela Shippy

Dr. Angela Shippy

Angela A. Shippy, MD, MHA, FACP, FHM is Amazon Web Services’ Senior Physician Executive and Clinical Innovation Lead, Healthcare. Previously, Dr. Shippy served as Senior Vice President, Chief Medical & Quality Officer at Memorial Hermann Health System where she had system-wide oversight for accreditation, clinical quality, employee and patient safety, lab, and pharmacy. Prior to Memorial Hermann, Dr. Shippy served as Chief Medical Officer of HCA’s Gulf Coast Division and as Vice President of Medical Affairs at St. Luke’s Episcopal Hospital in the Texas Medical Center where she practiced as a hospitalist. Dr. Shippy has served on local, state, and national councils and committees and held volunteer faculty positions at Baylor College of Medicine, UT Health-Houston, and The Institute of Healthcare Improvement. She currently serves as a member of the Martin Luther King, Jr. Memorial Foundation Board and on advisory committees for Women and Gender Studies at the University of Houston and The Houston Area Women’s Center.

Ashwini Davison, MD

Ashwini Davison, MD

Ashwini Davison is a board certified physician in internal medicine and clinical informatics. In her role as a healthcare executive advisor at Amazon Web Services (AWS), she supports academic medical centers accelerate their journey to the cloud. Prior to joining AWS, Dr. Davison was a full time faculty member at Johns Hopkins where her work focused on evaluating clinical decision support in EHRs, incorporating health systems science curricula into medical education, and growing online education programs in population health management and health informatics.

Oiendrilla Das

Oiendrilla Das

Oiendrilla Das is Customer Advocacy Lead for Life Sciences and Genomics Marketing for AWS. She comes from a background in life sciences marketing, with a specialty focus on life sciences and cloud computing. Oiendrilla holds an MBA degree in marketing and completed her engineering in Biotechnology prior to her MBA degree.