“Linking the Congenital Heart Surgery Database of the Society of Thoracic Surgeons with the Congenital Heart Surgeon’s Society Database”

Doctor's Name: 
Jeffrey Jacobs MD
Hospital/Institution: 
The Congenital Heart Institute of Florida, St. Petersburg, FL

This grant is being partially funded by Grant's Gala

“Linking the Congenital Heart Surgery Database of the Society of Thoracic Surgeons with the Congenital Heart Surgeon’s Society Database”

Tremendous progress has been made in the field of pediatric heart disease over the last 30 years. Pediatric heart problems that in the past were untreatable and lethal are now treated routinely with great success. Overall, 96% of children who undergo pediatric heart surgery survive and go home. Although survival after heart surgery on children has improved dramatically, complications after heart surgery still occur. These complications are sometimes quite harmful to these children.

            Efforts to decrease these complications often require collaboration involving many hospitals. Databases allow multiple hospitals to share data and collaborate in order to improve the quality of care provided for patients with pediatric and congenital heart disease.

            The Society of Thoracic Surgeons (STS) Congenital Heart Surgery Database is the largest database in the world of patients who have undergone congenital and pediatric cardiac surgical operations. The Congenital Heart Surgeons’ Society (CHSS) Database is one of the most respected and accomplished databases in the world that performs specialized detailed analyses of specific congenital cardiac malformations. Each database has unique strengths and weaknesses. The STS Congenital Heart Surgery Database tracks short-term outcomes on all patients undergoing pediatric and congenital cardiac surgery at participating institutions, but lacks data about long-term outcomes. The CHSS Database tracks detailed long-term outcome on very specific cohorts of enrolled patients, but lacks data about the overall denominator of eligible patients.

The overall goal of this project is to create a link of the STS Congenital Heart Surgery Database to the CHSS Database in order to facilitate studies not possible using either individual database alone.

            This project will create tools that will support future research in multiple domains. Successful completion of this project will

  1. Transform the STS Congenital Heart Surgery Database, the largest congenital and pediatric heart surgery database in the world, into a platform for longitudinal follow-up.
  2. Increase enrollment and participation in both the STS Congenital Heart Surgery Database and the CHSS Database by incentivizing institutions who participate in only one of these two databases to participate in both databases
  3. Minimize the burden of data entry in institutions that participate in both databases
  4. Create a platform for future collaborative investigation involving both the STS Congenital Heart Surgery Database and the CHSS Database, capitalizing on the strengths of each database and facilitating studies not possible using either individual database alone.
  5. Create a platform of generating new knowledge that will address many of the current limitations and knowledge gaps in the domain of congenital and pediatric cardiac surgery by expanding the pool of data available for analysis.

                 This linked dataset will also give The Children’s Heart Foundation considerable exposure in the academic and clinical communities of professionals caring for patients with congenital heart disease because The Children’s Heart Foundation will be acknowledged in all future publications generated from these linked data.

 

Award Date 1: 
2011
Award Amount 1: 
$100,00
Award Date 2: 
2012
Award Amount 2: 
$100,000