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The CAPNET multi-center data set for child physical abuse: Rationale, methods and scope
Devon M Kratchman1, Porcia Vaughn2, Ligia Batista Silverman3
1Safe Place: The Center for Child Protection and Health, PolicyLab, Center for Pediatric Effectiveness and Division of General Pediatrics, Children's Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104, United States.
Insights
Child Abuse Pediatrics research is advancing with CAPNET, a new multi-center network and data registry. This infrastructure aims to improve the quality and quantity of research in child abuse pediatrics.
Area of Science:
- Pediatric subspecialties
- Child abuse research
- Medical data infrastructure
Background:
- Child Abuse Pediatrics (CAP) became a certified subspecialty in 2006.
- CAP research is historically underfunded despite its impact on child health.
- Previous multi-center research networks in CAP have been limited in scope and duration.
Purpose of the Study:
- To outline the rationale, development, and scope of the CAPNET research network.
- To describe the CAPNET data registry and its associated data resources.
- To support Child Abuse Pediatrics-focused research through a collaborative network.
Main Methods:
- Established inclusion criteria, common data elements, and data quality assurance through consensus and iterative testing.
- Developed data sharing processes for children evaluated for physical abuse.
- Utilized an online data capture form for data abstraction.
Main Results:
- CAPNET is abstracting data for children under 10 years old evaluated for physical abuse across 10 US pediatric centers.
- Data collected includes demographics, medical/social history, examination findings, testing, diagnoses, and outcomes.
- Validated data is broadly available to Child Abuse Pediatrics investigators.
Conclusions:
- CAPNET provides a novel data resource for the Child Abuse Pediatrics research community.
- The network is expected to enhance both the quantity and quality of CAP-focused research.
- This infrastructure supports collaborative efforts to advance the field of Child Abuse Pediatrics.
Background:
The pediatric subspecialty of Child Abuse Pediatrics (CAP) was certified by the American Board of Medical Subspecialties in 2006. Relative to its impact on pediatric health, CAP-focused research has been relatively under-funded. Multi-center networks related to CAP-focused research have made important advances, but have been limited in scope and duration. CAPNET is multi-center network whose mission is to support CAP-focused research.
Objective:
To describe the rationale, development, and scope of the CAPNET research network infrastructure, the CAPNET data registry and associated data resources.
Methods:
Based on existing priorities for CAP-focused research, we used consensus building and iterative testing to establish inclusion criteria, common data elements, data quality assurance, and data sharing processes for children with concerns of physical abuse.
Results:
We describe the rationale, methods and intended scope for the development of the CAPNET research network and data registry. CAPNET is currently abstracting data for children <10 years (120 months) old who undergo sub-specialty evaluation for physical abuse at 10 US pediatric centers (approximately 4000 evaluations/year total) using an online data capture form. Data domains include: demographics; visit timing and providers, medical/social history, presentation, examination findings, laboratory and radiographic testing, diagnoses, outcomes, and data for contact children. We describe the methods and criteria for collecting and validating data which are broadly available to CAP investigators.
Conclusions:
CAPNET represents a new data resource for the CAP research community and will increase the quantity and quality of CAP-focused research.
