Research In Practice Blog
Editor's Note: This blog post originally appeared on the CHOP Research Institute’s Cornerstone Blog on November 25, 2024.
Researchers from Children’s Hospital of Philadelphia and Vanderbilt University Medical Center were awarded a $7.37 million National Institutes of Health (NIH) RC2 grant to focus on kidney stone disease research. The focus of the project will be to create a novel research tool called the Urinary Stone Disease Hub, known as USDHub, using de-identified patient data from over 230,000 individuals with kidney stone disease across nine health systems in the U.S.
The project will be led by Children’s Hospital of Philadelphia pediatric urologist Gregory Tasian, MD, MSc, MSCE and Vanderbilt urologist Ryan Hsi, MD. Dr. Tasian is an Associate Professor of Surgery and Epidemiology and serves as Director for the Center for Outcomes Research in Surgery (CORES) and the Associate Director for Clinical Trials at Clinical Futures, a CHOP Research Institute Center of Emphasis. Dr. Tasian and his collaborators are pursuing innovative strategies to create novel data solutions that will facilitate research that improves patient care for individuals with kidney stones; accelerate early-stage investigators’ research careers; and equip researchers with accessible information that does not currently exist in large databases.
Dr. Tasian has been leading efforts at CHOP to improve the health of children and adolescents with early-onset kidney stone disease through randomized trials, prospective observational studies, and large data analytics.
All of the participating sites are part of STAR and PEDSnet, two networks within the PCORnet National Patient-Centered Clinical Research Network that share a common data model of electronic health record data. Along with CHOP and Vanderbilt, these sites include University of North Carolina, Medical University of South Carolina, Duke University, Texas Children’s Hospital, Nationwide Children’s Hospital, Lurie Children’s Hospital of Chicago, and Cincinnati Children’s Hospital.
Developing a Novel Research Tool for Urinary Stone Disease Research
Urinary stone disease is a common and painful condition with significant morbidity. However, there have been limited advancements in its diagnosis and management, partly due to the lack of datasets containing important clinical information about individuals with urinary stone disease throughout their lives. This vital undertaking seeks to establish a robust data resource to bolster research efforts focused on urinary stone disease, with the ultimate goal of uncovering novel insights that will positively impact the health outcomes of all individuals grappling with this challenging condition.
The mission of USDHub is to promote, support, and accelerate investigator-initiated research in USD. USDHub will appeal to a broad and diverse research community across clinical specialties, methodological disciplines, and career stages, including trainees.
USDHub Project Aims
The first aim of the 5-year project is to create a research cohort of more than 236,000 individuals across the lifespan with urinary stone disease. Researchers will identify children and adults with kidney and ureteral stones from 4 STAR and 5 PEDSnet sites, leveraging the size and geographic diversity of the health systems to ensure generalizability, scalability, and feasibility of future research studies. They will link extant structured data in the PCORnet common data model (e.g., procedures, anthropomorphic measurements, lab results, prescriptions) with clinically important external data, namely 24-hour urine chemistry results and kidney stone composition.
The project’s second aim is to augment the standard data model with data extracted from CT images and clinical notes. Researchers will enrich USDHub by extracting key information from unstructured clinical notes (e.g.., operative reports, radiology reports, discharge summaries, and ED notes) using natural language processing and large language models and extracting clinically important features from CT images (e.g., stone size, stone location, stone volume, stone density) using advanced machine learning algorithms developed by their team.
The project’s third aim is to disseminate the USDHub to researchers broadly. The team will establish sustainable access to USDHub data beyond the funding period, which will be facilitated by integrating the expanded data back into the STAR and PEDSnet databases. They will create a public website with cohort information, data dictionaries, counts, and data access. They will partner with the USD research community, led by a USDHub Steering Committee that includes patient and caregiver stakeholders, to user test and refine the data access process. To maximize impact, the USDHub team will:
- Offer pilot grants
- Provide clinics to orient researchers to USDHub data
- Partner with professional organizations to disseminate USDHub to USD research communities
Making a Lasting Impact
The outcome of USDHub will be a new research ecosystem that would transform the way USD research is conducted and enable investigators to generate impactful real-world knowledge. This transformation will improve clinical care and outcomes for the increasing number of both children and adults with USD. While urinary and kidney stones are traditionally thought of as an adult diagnosis, kidney stones in children are becoming more common, and CHOP clinicians encounter them daily. Among other questions, USDHub will enable research that strengthens the evidence supporting the management of children with kidney stones. The project will facilitate and accelerate hypothesis-testing research, leading to significant and clinically relevant discoveries that will enhance the health of individuals and populations with USD throughout their lifespan. A key component will be broad dissemination, making the resource accessible to research communities at large.
“USDHub creates a novel resource that will transform kidney stone disease research by bringing together experts in data science, machine learning, patient engagement, kidney stone disease, and learning health systems as well as patients living with kidney stones and their caregivers. The foundation for pediatric patients in USDHub is PEDSnet, which brings together a large multi-specialty network of health systems, researchers and clinicians, and patients and families. This community works together to identify and answer the most important research questions that can reduce children's suffering and support their healthy development,” Dr. Tasian said.
Led by Christopher Forrest, MD, PhD and L. Charles Bailey, MD, PhD, PEDSnet consists of 11 children’s hospital members that provide care for 10% of the nation’s children. Its mission is to conduct multicenter learning health system science projects that improve the care and outcomes of children and pediatric healthcare systems.
Dr. Tasian continued, “Through this partnership with PEDSnet, the USDHub will finally provide us with longitudinal data and eliminate our reliance on single-center data sources that segregate pediatric and adult patients.”
The USD Hub is funded by the National Institute of Diabetes and Digestive and Kidney Diseases (grant RC2DK140865). The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is part of the National Institutes of Health (NIH), the nation’s medical research agency. They conduct and support biomedical research, disseminating research findings and health information to the public, and are part of the U.S. government under the Department of Health and Human Services.
Learn more in this CHOP press release.