Ten Years of Data Verification: The European Congenital Heart Surgeons Association Congenital Database Audits

Herbst, Claudia; Tobota, Zdzisław; Urganci, Erhan; Sarris, George E.; Jacobs, Jeffrey P.; Kansy, Andrzej; Maruszewski, Bohdan

doi:10.1177/21501351221103794

“…The database functions allow users to create customized online reports on subgroups of patients and procedures. Verification of the completeness and accuracy of the data in ECHSA-CD is performed utilizing “ source data verification .” 16 – 18 The technical details of “ source data verification ” have been previously published 16 – 18 and include an audit of the data at individual hospitals (for both completeness and accuracy 19 ), with comparison of the data in ECHSA-CD to the primary source of the data at the hospital (eg, hospital operative logs and hospital medical records). (This process of “ source data verification ” that is currently applied to ECHSA-CD will continue to be applied in ECHSA-CD and will also be applied to the AEPC Interventional Cardiology Part of the ECHSA-CD .)…”

Section: Methods—history Of the Projectmentioning

confidence: 99%

Combining Congenital Heart Surgical and Interventional Cardiology Outcome Data in a Single Database: The Development of a Patient-Centered Collaboration of the European Congenital Heart Surgeons Association (ECHSA) and the Association for European Paediatric and Congenital Cardiology (AEPC)

Jacobs

¹

,

Krasemann

²

,

Herbst

³

et al. 2023

World J Pediatr Congenit Heart Surg

Self Cite

View full text Add to dashboard Cite

The European Congenital Heart Surgeons Association (ECHSA) Congenital Database (CD) is the second largest clinical pediatric and congenital cardiac surgical database in the world and the largest in Europe, where various smaller national or regional databases exist. Despite the dramatic increase in interventional cardiology procedures over recent years, only scattered national or regional databases of such procedures exist in Europe. Most importantly, no congenital cardiac database exists in the world that seamlessly combines both surgical and interventional cardiology data on an international level; therefore, the outcomes of surgical and interventional procedures performed on the same or similar patients cannot easily be tracked, assessed, and analyzed. In order to fill this important gap in our capability to gather and analyze information on our common patients, ECHSA and The Association for European Paediatric and Congenital Cardiology (AEPC) have embarked on a collaborative effort to expand the ECHSA-CD with a new module designed to capture data about interventional cardiology procedures. The purpose of this manuscript is to describe the concept, the structure, and the function of the new AEPC Interventional Cardiology Part of the ECHSA-CD, as well as the potentially valuable synergies provided by the shared interventional and surgical analyses of outcomes of patients. The new AEPC Interventional Cardiology Part of the ECHSA-CD will allow centers to have access to robust surgical and transcatheter outcome data from their own center, as well as robust national and international aggregate outcome data for benchmarking. Each contributing center or department will have access to their own data, as well as aggregate data from the AEPC Interventional Cardiology Part of the ECHSA-CD. The new AEPC Interventional Cardiology Part of the ECHSA-CD will allow cardiology centers to have access to aggregate cardiology data, just as surgical centers already have access to aggregate surgical data. Comparison of surgical and catheter interventional outcomes could potentially strengthen decision processes. A study of the wealth of information collected in the database could potentially also contribute toward improved early and late survival, as well as enhanced quality of life of patients with pediatric and/or congenital heart disease treated with surgery and interventional cardiac catheterization across Europe and the world.

show abstract

“…Verification of the completeness and accuracy of the data in ECHSA-CD is performed utilizing "source data verification." [16][17][18] The technical details of "source data verification" have been previously published [16][17][18] and include an audit of the data at individual hospitals (for both completeness and accuracy 19 ), with comparison of the data in ECHSA-CD to the primary source of the data at the hospital (eg, hospital operative logs and hospital medical records). (This process of "source data verification" that is currently applied to ECHSA-CD will continue to be applied in ECHSA-CD and will also be applied to the AEPC Interventional Cardiology Part of the ECHSA-CD.)…”

Section: Methods-history Of the Projectmentioning

confidence: 99%

Combining Congenital Heart Surgical and Interventional Cardiology Outcome Data in a Single Database: The Development of a Patient-Centered Collaboration of the European Congenital Heart Surgeons Association (ECHSA) and the Association for European Paediatric and Congenital Cardiology (AEPC)

Jacobs,

Krasemann,

Herbst

et al. 2023

Self Cite

View full text Add to dashboard Cite

The European Congenital Heart Surgeons Association (ECHSA) Congenital Database (CD) is the second largest clinical pediatric and congenital cardiac surgical database in the world and the largest in Europe, where various smaller national or regional databases exist. Despite the dramatic increase in interventional cardiology procedures over recent years, only scattered national or regional databases of such procedures exist in Europe. Most importantly, no congenital cardiac database exists in the world that seamlessly combines both surgical and interventional cardiology data on an international level; therefore, the outcomes of surgical and interventional procedures performed on the same or similar patients cannot easily be tracked, assessed, and analyzed. In order to fill this important gap in our capability to gather and analyze information on our common patients, ECHSA and The Association for European Paediatric and Congenital Cardiology (AEPC) have embarked on a collaborative effort to expand the ECHSA-CD with a new module designed to capture data about interventional cardiology procedures. The purpose of this manuscript is to describe the concept, the structure, and the function of the new AEPC Interventional Cardiology Part of the ECHSA-CD, as well as the potentially valuable synergies provided by the shared interventional and surgical analyses of outcomes of patients. The new AEPC Interventional Cardiology Part of the ECHSA-CD will allow centers to have access to robust surgical and transcatheter outcome data from their own center, as well as robust national and international aggregate outcome data for benchmarking. Each contributing center or department will have access to their own data, as well as aggregate data from the AEPC Interventional Cardiology Part of the ECHSA-CD. The new AEPC Interventional Cardiology Part of the ECHSA-CD will allow cardiology centers to have access to aggregate cardiology data, just as surgical centers already have access to aggregate surgical data. Comparison of surgical and catheter interventional outcomes could potentially strengthen decision processes. A study of the wealth of information collected in the database could potentially also contribute toward improved early and late survival, as well as enhanced quality of life of patients with pediatric and/or congenital heart disease treated with surgery and interventional cardiac catheterization across Europe and the world.

show abstract

“…Since the quality of care has a major impact on patients' long-term outcomes and quality of life, several scientific registries have been established worldwide during the recent decades to assess the outcome and to improve the quality of treatment. [1][2][3][4][5][6][7][8][9] At the beginning of this century, cardiac surgical procedures in CHD were subject to a nationwide obligatory external quality assurance in Germany. In 2004, this obligatory quality assurance measure, according to § 136ff Social Code Book V, was suspended by the political representatives (Bundeskuratorium) for various reasons.…”

Section: Introductionmentioning

confidence: 99%

German Registry for Cardiac Operations and Interventions in Congenital Heart Disease: Annual Report 2022

Hofbeck,

Arenz,

Bauer

et al. 2024

Thorac Cardiovasc Surg

0

View full text Add to dashboard Cite

In 2021 a total of 5439 patients were included by 22 participating centers. In total 3721 surgical, 3413 interventional and 34 hybrid procedures were performed during 6122 hospital stays. 2220 cases (36.3%) could be allocated to the 15 index procedures. The mean unadjusted in-hospital mortality ranged from 0.4% among interventional and 2% among surgical cases up to 6.2 % in cases with multiple procedures. In-hospital mortality among index procedures accounted for 2.3% in TCPC, 20.3% in Norwood procedures and 0.4% following interventional closure of patent ductus arteriosus. For the remaining 7 surgical and 5 interventional index procedures no in-hospital deaths were recorded. The 10 years longitudinal evaluation of 1795 patients after tetralogy of Fallot repair revealed repeat interventional or surgical procedures in 21% of the patients. Over the same period 31.1% of 2037 patients, following initial treatment of native coarctation, required at least one additional hospital admission, 39.4% after initial interventional and 21.3% after initial surgical therapy. Conclusion The annual report 2021 of the German Registry for Cardiac Operations and Interventions in CHD shows continuously good results in accordance with previous data of the registry. Compared to international registries on CHD it can be ascertained that in Germany invasive treatment of CHD is offered on a high medical level with excellent quality. The proven fact that patients with various malformations like tetralogy of Fallot and coarctation of the aorta require repeat procedures during follow-up confirms the urgent requirement of longitudinal assessment of all patients presenting with complex lesions.

show abstract

Ten Years of Data Verification: The European Congenital Heart Surgeons Association Congenital Database Audits

Cited by 4 publications

References 9 publications

Combining Congenital Heart Surgical and Interventional Cardiology Outcome Data in a Single Database: The Development of a Patient-Centered Collaboration of the European Congenital Heart Surgeons Association (ECHSA) and the Association for European Paediatric and Congenital Cardiology (AEPC)

Combining Congenital Heart Surgical and Interventional Cardiology Outcome Data in a Single Database: The Development of a Patient-Centered Collaboration of the European Congenital Heart Surgeons Association (ECHSA) and the Association for European Paediatric and Congenital Cardiology (AEPC)

Combining Congenital Heart Surgical and Interventional Cardiology Outcome Data in a Single Database: The Development of a Patient-Centered Collaboration of the European Congenital Heart Surgeons Association (ECHSA) and the Association for European Paediatric and Congenital Cardiology (AEPC)

German Registry for Cardiac Operations and Interventions in Congenital Heart Disease: Annual Report 2022

Contact Info

Product

Resources

About