The Congenital Diaphragmatic Hernia Study Group: a voluntary international registry

https://doi.org/10.1053/j.sempedsurg.2008.02.004Get rights and content

The Congenital Diaphragmatic Hernia Registry (CDHR) was established to collect data on all infants treated at participating institutions with congenital diaphragmatic hernia (CDH) to assess therapy and improve outcome. Since 1995, the CDHR has accumulated data on over 4000 infants. The collective efforts of the CDH Study Group have provided valuable information regarding the efficacy of various therapeutic interventions and have tried to establish predictors of outcome. Because CDH is an uncommon, heterogeneous structural anomaly with a wide spectrum of severity, individual institutions may vary significantly in their experiences and treatment approaches. International multicenter registries, like the CDHR, are useful to provide clinically relevant direction by accumulating far more data on a large patient population than any single institution might.

Section snippets

CDHR data collection

Since 1995, there have been three versions of the data collection tool. With each update, the CDHSG has attempted to streamline information to provide an accurate reflection of the practice among individual centers. With each revision, data deemed irrelevant has been eliminated and new data points have been added as a result of lessons learned from previous versions. The data form was designed to capture information related to prenatal evaluation, delivery status, neonatal intensive care

Reports from the CDHSG

To date, the CDHSG has produced 15 reports using the data generated from the CDHR. Because the data are submitted on a voluntary basis, any individual associated with the CDHSG may have access to the data. This information has been used to report on current therapy, to establish risk stratification profile, to predict outcome, and as concurrent comparative data for clinical trials.

Summary

The CDHR is a prospective, voluntary cohort study which has been developed over the last 12 years. The success of the program is based on the continued interest of participating institutions that have consistently provided data on their own patients. Because of the nature of the database, several key points merit emphasis. Data from the CDHSG must be used with caution. The CDHR is an observational study from multiple institutions. Such studies are expensive to produce. In addition to a part

Cited by (0)

View full text