About the PEDSpace Knowledge Bank
PEDSpace is an open-access repository powered by PEDSnet. PEDSpace serves as a centralized hub where digital assets generated for and as a result of PEDSnet studies are made readily accessible to researchers, clinicians, and stakeholders.
In PEDSpace, users are able to explore a wealth of resources to facilitate impactful research endeavors. Among these assets are variable definitions, study results, and modules for assessing data quality. Each component is designed to empower researchers with the tools necessary to navigate complex pediatric healthcare data effectively.
PEDSpace Collections
PEDSnet Studies
This collection catalogs research conducted using PEDSnet data, including both active projects and those initiated or completed since 2018. These studies reflect the wide-ranging capabilities of the PEDSnet Learning Health System, which integrates data from multiple pediatric institutions to support scalable, real-world evidence generation. Each study entry is linked to its corresponding peer-reviewed publications, as well as any concept sets, phenotype algorithms, or analytic tools developed during its course—enabling transparency, reproducibility, and reuse across future research efforts.
Studies in the collection are systematically organized by funding project, data source, and thematic area, making it easy to explore based on research focus or collaborative network. Studies conducted as part of large grant-funded projects such as the Glomerular Disease Learning Network (GLEAN) or Pediatric KIDney Stone (PKIDS) Care Improvement Network, or Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE). Data source domains include PCORnet® Study and PEDSnet Study designation.
By showcasing this breadth of research, the collection not only serves as a valuable resource for current investigators but also highlights the ongoing contributions of PEDSnet to advancing learning health systems research, where continuous improvement in care is informed by systematically gathered and analyzed data.
Variable Definitions
This collection contains variable definitions based on phenotypic algorithms that identify cohorts of patients exhibiting specific clinical characteristics, conditions, or patterns of interest, as derived from electronic health records (EHRs). These phenotypes are defined using logic statements (algorithms) with combinations of diagnosis codes, procedures, medications, laboratory results, and other structured EHR data elements (concept sets) to represent real-world clinical presentations.
The collection is designed to support reproducibility and consistency across studies by clearly outlining the logic used to define each phenotype. It complements the PEDSnet concept set collection by offering a high-level overview of the variables defined in PEDSnet research, enabling users to explore how clinical features are operationalized across studies.
Concept Sets
Concept sets, also known as code sets or value sets, are curated collections of standardized clinical codes used to represent specific clinical ideas, conditions, or treatments. These sets play a critical role in clinical research, healthcare analytics, and electronic health record (EHR) systems by enabling consistent identification and grouping of medical information across different data sources. Concept sets are typically built using standardized terminologies such as SNOMED CT, ICD-10, HCPCS, and RxNorm, which ensure semantic consistency and interoperability.
This particular collection includes concept sets developed as part of PEDSnet research initiatives. These sets are often used in combination with algorithmic logic to define and identify patient cohorts for observational studies and data analyses.
The concept sets are systematically organized into eight clinical domains:
- Devices
- Diagnoses
- Procedures
- Visits
- Laboratory results
- Physiological measurements
- Environmental and socioeconomic variables
- Medications
Each set includes individual codes representing approved, standardized concepts drawn from reputable clinical ontologies. All concept sets are available for download in CSV format via PEDSpace, making them easy to integrate into data analysis workflows or cohort-building tools.
Data Quality Modules
This collection offers access to an array of study-specific and network-level data quality analysis modules, designed to support robust and reliable clinical observational research within a learning health system like PEDSnet. High-quality data is foundational to generating valid, actionable insights in such systems where research and practice are tightly integrated.
Researchers can browse the collection to identify categories of data quality analyses or filter to select checks that align with specific stages of the research lifecycle—from initial cohort design to final analysis.
The Data Quality Collection comprises a comprehensive set of modules targeting key areas:
- Cohort Fitness: Evaluating whether a dataset can adequately represent the intended population.
- Cohort Identification: Validating inclusion/exclusion logic using real-world data signals.
- Concept Set Testing: Ensuring the accuracy and appropriateness of clinical concept definitions.
- Data Conformance: Checking for adherence to data model standards and vocabularies.
- Dataset Fitness: Assessing completeness, consistency, and temporal coverage of data.
- Variable Testing: Verifying the presence, distribution, and utility of analytic variables.
Data Quality ResultsComing Soon
This collection contains the results of data quality analyses conducted using PEDSnet's Data Quality Modules. This collection includes analyses for the entire PEDSnet Network, conducted on a quarterly basis, as well as analyses performed during individual research studies utilizing PEDSnet data. It provides detailed insights into the accuracy, consistency, completeness, and reliability of data collected across multiple studies and institutions.
PEDSnet Resources
This collection serves as a centralized repository to support the operational, technical, and collaborative needs of PEDSnet's participating sites and research collaborators. This collection encompasses a diverse array of resources, ranging from technical documentation and data dictionaries to administrative guidelines and instructional content.
The collection is systematically organized into several key domains:
- Data Architecture: Contains table one metrics for current and historical versions of the PEDSnet database, ETL specifications, and comprehensive data dictionaries for OMOP, PEDSnet, and PCORnet.
- Electronic Resources: Features a catalog of web applications, providing tools and interfaces to interact with the network's data and resources.
- Documentation & Tutorials: Offers detailed documentation, including user guides, and instructional materials.
- Institutions: Provide data provenance records for each participating site.
- Reusable Code: Frequently used functions which may be readily customized per study needs.
Mission
As a testament to our commitment to transparency, collaboration, and FAIR data-sharing principles, PEDSpace represents the collective efforts of the PEDSnet community. By fostering open access to essential resources, we aim to catalyze groundbreaking discoveries and innovations in pediatric healthcare, ultimately advancing the well-being of children worldwide.
Contributors
Content found in PEDSpace is generated by members of the PEDSnet Data Coordination Center and Federated Coordination Center (previously known as the Center Without Walls) and maintained by the site administrators and metadata librarian. If you are a data scientist at a PEDSnet site with concept sets or phenotype algorithms to deposit, you may request an account. To do so, please contact pedsnetdcc@chop.edu with the subject line "PEDSpace: Account Request". Please include your first and last name and professional email address in your email.
If you have an account and would like additional guidance on input standards, or you would like to submit an updated concept set version to the repository, please contact the site administrator for assistance.
Contact Information
Please direct general inquiries or comments to pedsnetdcc@chop.edu with the subject line "PEDSpace: General Inquiry".
Citations
PEDSpace provides each item with a persistent and stable identifier called a handle which can be used to find and cite content. Handle links are appropriate for use in citations, CVs, ORCID profiles, etc. The handle is different from the link that appears in the browser's address bar. It can be accessed by selecting the clipboard icon on the item record.
We recommend citing content in PEDSpace using the following format:
Lastname, F. (YYYY, Month). Title of Page. [Object Type]. Site Name. HandleFor example:
Nyugen, N. (2024, January). Kidney Transplant. [Concept Set]. PEDSpace Knowledge Bank. https://hdl.handle.net/20.500.14642/1048Technical Summary
PEDSpace is built on an open-source technology stack, DSpace. Our configuration is freely available on GitHub.
Please contact pedsnetdcc@chop.edu with the subject line "PEDSpace: Data Export" to request a bulk data export.
Commitment to Open Access
We aim to provide access to collections with exclusive or non-exclusive copyrights held by PEDSnet or works in the public domain. Items for which copyrights have not been transferred or provided to PEDSnet through a non-exclusive license (i.e., items whose copyright is solely held by an external entity) will not be accessioned to the collection. All items in the repository are licensed for public re-use with a Creative Commons CC-BY 4.0 Attribution license.
These collections are made accessible for education and research. If you hold the rights to materials in our online collections that are unattributed or for which you have not granted permission, you may request the removal of material from our site by emailing pedsnetdcc@chop.edu with the subject line "PEDSpace: Take Down Request". Please include the following information in your email:
- Identification of the material that you believe to be infringing and information sufficient to permit us to locate the material;
- Your contact information, such as an address, telephone number, and email address;
- A statement that you are the owner, or authorized to act on behalf of the owner, of an exclusive right that is allegedly infringed and that you have a good-faith belief that use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law;
- A statement that the information in the notification is accurate and made under penalty of perjury, and
- Your physical or electronic signature.
