The Congenital Diaphragmatic Hernia Study Group: a voluntary international registry
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
References (21)
- et al.
A five-year statewide experience with congenital diaphragmatic hernia
Am J Obstet Gynecol
(1991) - et al.
Congenital diaphragmatic hernia: epidemiology and outcome
Clin Perinatol
(1996) - et al.
Congenital diaphragmatic hernia: a simplified postnatal predictor of outcome
J Pediatr Surg
(2007) Cardiac anomalies in patients with congenital diaphragmatic hernia and their prognosis: a report from the Congenital Diaphragmatic Hernia Study Group
J Pediatr Surg
(2005)- et al.
Current surgical management of congenital diaphragmatic hernia: a report of the Congenital Diaphragmatic Hernia Study Group
J Pediatr Surg
(1998) Is Surfactant therapy beneficial in the management of the term newborn with congenital diaphragmatic hernia?
J Pediatrics
(2004)Surfactant replacement therapy on ECMO does not improve outcome in neonates with congenital diaphragmatic hernia
J Pediatr Surg
(2004)- et al.
Corticosteroids for fetuses with congenital diaphragmatic hernia: can we show a benefit?
J Pediatr Surg
(2006) - et al.
Prenatal diagnosis of congenital diaphragmatic hernia: how should the babies be delivered?
J Pediatr Surg
(2007) - et al.
Congenital diaphragmatic hernia: a tale of two cities: the Boston experience
J Pediatr Surg
(1997)