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Congenital diaphragmatic hernia: The role of multi-institutional collaboration and patient registries in supporting
Pamela A Lally1, Erik D Skarsgard2
1Department of Pediatric Surgery, McGovern Medical School at UT Health and Children's Memorial Hermann Hospital, Houston, Texas.
Insights
Patient registries offer a valuable alternative to randomized controlled trials for studying congenital diaphragmatic hernia (CDH). These registries facilitate collaborative research and quality improvement by aggregating multi-institutional data for rare diseases like CDH.
Area of Science:
- Pediatric Surgery
- Clinical Research Methodology
- Rare Disease Management
Background:
- Congenital diaphragmatic hernia (CDH) presents unique challenges in research due to its low incidence and variable clinical course.
- Randomized controlled trials (RCTs) are often unsuitable for studying CDH because of difficulties in patient stratification and assessing single interventions.
Purpose of the Study:
- To explore the utility of patient registries as a comparative effectiveness research tool for congenital diaphragmatic hernia (CDH).
- To discuss the structural, data management, and privacy considerations essential for effective patient registry implementation in CDH research.
Main Methods:
- Discussion of patient registry frameworks, including data collection, management, and privacy protection protocols.
- Illustrative examples of two CDH-specific registries highlighting their value proposition.
Main Results:
- Patient registries enable the aggregation of multi-institutional, condition-specific data for rare diseases like CDH.
- Registries support collaborative, multidisciplinary research and quality improvement initiatives.
Conclusions:
- Patient registries are a crucial resource for advancing evidence-based best practices in congenital diaphragmatic hernia (CDH) care.
- The structure and management of registries are key to leveraging multi-institutional data for research and improving outcomes in CDH.
Abstract:
Among congenital malformations, congenital diaphragmatic hernia (CDH) is distinguished by its relatively low occurrence rate, need for resource intensive, integrated multidisciplinary care, and widespread variation in practice and outcome. Although randomized controlled trials (RCTs) are considered the gold standard for generating evidence, they are poorly suited to the study of a condition like CDH due to challenges in illness severity adjustment, unpredictability in clinical course and the impact limitations of studying a single intervention at a time. An alternative to RCTs for comparative effectiveness research for CDH is the patient registry, which aggregates multi-institutional condition-specific patient level data into a large CDH-specific database for the dual purposes of collaborative research and quality improvement across participating sites. This article discusses patient registries from the perspective of structure, data collection and management, and privacy protection that guide the use of registry data to support collaborative, multidisciplinary research. Two CDH-specific registries are described as illustrative examples of the "value proposition" of registries in improving the evidence basis for best practices for CDH.
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