Data Collaboration & Partnerships

Our partnerships are a defining piece of our culture at Nationwide Children’s, and collaboration is a critical part of our strategy to improve the lives of children everywhere. ODS leads and participates in multisite data collaborations that advance pediatric research at a national scale through knowledge sharing, infrastructure development and real-world evidence (RWE) generation.

PEDSnet

PEDSnet is a collaborative network of patients, families, clinicians, scientists and health system leaders who work together to create a national evidence-generation system that stewards trustworthy, interoperable, real-world data (RWD) for high-quality clinical research. This network is dedicated to improving children’s health through the conduct of patient-centered outcomes research, reducing resource barriers to deriving meaningful clinical insights from health data and facilitating translation of RWD-driven discoveries into better care and better outcomes more efficiently.

Across its contributing institutions, PEDSnet has created an analysis-ready database that represents more than 15 million youth located in all 50 U.S. states and spans all pediatric diseases and clinical specialties. PEDSnet is continually building more comprehensive data sets by linking its clinical data to complementary sources, such as pediatric disease registries and insurance claims databases.

PEDSnet has also ratified data governance policies that set the standard for pediatric health data sharing. Its governance structure supports the network’s core principle of stakeholder engagement throughout the research process, with a focus on partnerships with patients, families and health leaders. In this structure, pediatric patients and parents are seen as equal partners in research and clinical breakthroughs.

PEDSnet is the only pediatrics-focused Clinical Research Network supported by the National Patient-Centered Clinical Research Network, or PCORnet. PCORnet is an initiative launched by the Patient-Centered Outcomes Research Institute to build a national resource for conducting real-world, patient-centered observational and interventional research.

As a Pediatric Learning Health System Clinical Research Network, PEDSnet operates through the PCORnet network model. Shared data remains at its source while approved researchers within and outside the network can access it safely through a centralized, secure research enclave. PEDSnet also advances data interoperability through its adherence to the PCORnet Common Data Model, which standardizes diverse patient care data streams across clinical settings and systems of record.

As one of eight founding members of PEDSnet, Nationwide Children’s occupies a critical leadership role. Since its inception, PEDSnet has grown to include health data from more than 1.2 million Nationwide Children’s patients, leading to important breakthroughs for patients with lupus, infectious diseases and genetic aneuploidies.

ODS leaders have led and supported innovations in technical data stewardship and regulatory practice. ODS is also spearheading the effort to designate Nationwide Children’s as a PEDSnet Data Coordinating Center. This designation would further strengthen Nationwide Children’s leadership among PEDSnet member institutions while expanding the hospital’s real-world evidence research infrastructure and available resources.

LifeScale

A partnership between The Ohio State University Wexner Medical Center and Nationwide Children’s through ODS, LifeScale is a secure, cloud-based analytics platform that integrates longitudinal clinical, social and behavioral data with elastic, high-performance computing resources to accelerate biomedical discovery.

LifeScale addresses two key challenges in the analysis of clinical data. It streamlines access to a rich collection of clinical data and provides a computing environment for working with those data that protects patient privacy and maintains robust information security.

LifeScale supports discovery by providing governed access to a lifespan-linked data set with coded identifiers that connects disparate health domains over time to form a 360-degree view of the patient. LifeScale Core Data includes electronic medical record data from The Ohio State University Wexner Medical Center and Nationwide Children’s, as well as area-level social determinants of health data from the Ohio Opportunity Index and Ohio Children’s Opportunity Index.

LifeScale provides access to these data in a cloud-based environment called the LifeScale Unified Platform. Research teams can use integrated Databricks tools to prepare and analyze data with computing resources that scale to meet different needs. Collaboration features are also built into the platform.

What makes LifeScale unique:

• Comprehensive patient view. LifeScale provides a more comprehensive view of a patient’s health over their lifespan by linking clinical experiences across institutions. This facilitates research on children moving across systems of care, supports the study of long-term health trajectories as pediatric patients age into adulthood and connects data between mothers and children to enable fetal and maternal-child outcomes research.
• Accelerated biomedical discovery. LifeScale presents data and tools within a common framework that supports research-to-operations interoperability, accelerating the translation of biomedical insights into clinical impact.
• Secure collaboration environment. LifeScale offers a secure, cloud-based workspace where researchers can collaborate and share their work.
• Scalable computing power. Researchers can access computing resources that quickly scale to fit their needs, regardless of the size of the data set or the analytic approaches involved.
• Privacy-preserving data democratization. Rather than curating data for individual projects, LifeScale focuses on data transparency within a human subjects-compliant framework, removing procedural hurdles that can slow research.

Maternal and Pediatric Precision in Therapeutics (MPRINT)

MPRINT is a national data-sharing collaborative that fosters therapeutics-focused research in obstetrics, lactation and pediatrics while enhancing the inclusion of people with disabilities. MPRINT provides funding to maternal and pediatric therapeutics researchers across the United States and develops advanced tools that support maternal and pediatric pharmacology research, including:

• Knowledge Portal: A curated database of maternal and pediatric pharmacology research that gathers data from across the field.
• COPPER: A database of biobanks with biosamples that can be used for collaborative maternal and pediatric research.
• Peds Phecodes: A database of pediatric-specific codes that helps transform electronic health record data into usable phenotypes for research.

The MPRINT Hub, composed of five primary academic medical sites, serves as a national resource to aggregate, present and expand the available knowledge, tools and expertise in maternal and pediatric therapeutics for research, regulatory science and drug development communities. The Hub comprises:

• Data, Modeling, Knowledge and Research Coordination Center (DMKRCC): The DMKRCC coordinates and supports the operations of the MPRINT Hub, interfaces with the Centers of Excellence and maintains a web portal that provides access to a comprehensive knowledge base of maternal and pediatric pharmacology and therapeutics. The DMKRCC curates the knowledge base to identify gaps in research and practice, including pharmacokinetics, pharmacodynamics, pharmacoepidemiology, pharmacogenomics and other omics approaches that inform drug development and regulatory science. It also contains specialized cores dedicated to the Knowledge Portal, COPPER, pharmacometrics and clinical trial design and real-world evidence.
• Centers of Excellence in Therapeutics: These centers work together and with the DMKRCC to conduct clinical, translational and basic research, provide resources and generate novel tools and approaches that advance research and regulatory science in maternal and pediatric therapeutics.
• Translational Research Resource Platform: This platform supports team science and collaborative research that uses existing or prospective resources, including biorepositories, omics data, tissue-specific genomic and epigenomic atlases and electronic health records. It also supports the development of analytic tools and laboratory platforms, the discovery of biomarkers with translational potential and the validation and qualification of biomarkers for maternal and pediatric conditions.

While ODS facilitates Nationwide Children’s contributions to all of MPRINT’s core programs, it holds a particular leadership role within the real-world evidence core. ODS uses its data science expertise to ensure that multi-institutional health records data are transformed into FAIR research data resources. This work extends ODS’s strategic vision across institutional boundaries and builds on ODS's scholarly accomplishments in real-world evidence generation.

Collaborate With Our Team

We are actively open to internal, cross-institutional and cross-sector collaborations that combine data and technology to improve the lives of pediatric patients and families. If you are interested in working with ODS, please reach out by email.