Initially, the World Database for Pediatric and Congenital Heart Surgery has focused its efforts on providing quality information to individual congenital heart programs across the globe. The mission of the World Database has slightly shifted over the last few years to include fostering better global communication between all caretakers who treat congenital heart disease. Creation of a global platform to acquire knowledge and expertise for the treatment of congenital heart disease is critical for the care of children throughout the world. This need is exemplified by the significant number of children that lack adequate access to such care. It is estimated that almost 75% of the world’s population lack access to adequate therapy to treat congenital heart disease. A critical mission of the World Society for Pediatric and Congenital Heart Surgery (WSPCHS) is to create a platform “to promote the highest quality of comprehensive cardiac care to all patients with congenital heart disease across the globe” The WSPCHS has recently embraced an effort to foster the development of dedicated national congenital heart surgery databases across the globe. The initial effort with creation of a national congenital heart surgery database occurred in South Korea. Currently 8 individual Korean centers contribute to the linkage to the global platform created by the WSPCHS. Similar efforts, at various stages, are underway in Vietnam, Philippines, Mexico, Argentina, Indonesia, Thailand, and Malaysia.
Sincerely,
James D. St. Louis, Database Chair/Secretary
James K. Kirklin, WSPCHS Immediate-past President
Christo I. Tchervenkov, WSPCHS Executive Director
World Database Committee 2024
The World Database Committee includes a group of individuals that have dedicated their time and effort to the mission of the World Database, both in action and submission of patients. The agenda of the committee, through conference calls and sessions held at WSPCHS meetings, will address and provide input into current database issues. The committee will continue to provide insight into future directions of the database. With increase in the number of requests for data and the analysis for this data for specific QI projects, the committee will also serve to review and approve such projects. Our plan will be to begin virtual committee meetings early in 2023. As we move into 2024, we hope this group will assist in defining the future direction of the database, with the ongoing evolution of what is provided to our participants and advance the care of our patients.
| James St. Louis Chairman: (WDPCHS) Augusta, GA | James Kirklin President: WSPCHD Birmingham, AL | Christo Tchervenkov Executive Director WSPCHS Montreal, Canada |
| Erle Austin Louisville, KY | Nestor Sandoval Bogota, Columbia | Jorge Cerventes Mexico City, Mexico |
| Kirsten Finucane Auckland, Zealand | B R Jagannath Hyderabad, India | Aseem Srivastava New Delhi, India |
| Budi Rahmat Djakarta, Indonesia | Luis F. Caneo Sao Paulo, Brazil | Marcelo B. Jatene Sao Paulo, Brazil |
| Krishna Iyer New Delhi, India | Sivakumar Sivalingam Kuala Lumpur, Malaysia | Hafil Abdulgani Djakarta, Indonesia |
| Shou Jun Lee Beijing, China | Hao Zhang Shanghi, China | Nguyen Ly Thinh Truong Hanoi, Vietnam |
| Yastake Hirata Shizuoka City, Japan | Brian Bateson Louisville, KY | Ignacio Juaneda Cordoba, Argentina |
| Cheul Lee Seoul, Korea |
Web Based Data Entry Updates-Version 1.0.12 (May 7, 2024)
The most recent revision is live in the web based data entry system, and the updated forms, form manual, and appendices are available on the website at Data Collection forms.
Since our last newsletter, the World database has had three minor releases. Version 1.0.11 was released October 28, 2022, and included one security improvement and several changes for CHSS participants:
- New Features
- Enabled HTTP Strict-Transport-Security response header to fix a system vulnerability.
- New Features (CHSS)
- CHSS users now have their own login page.
- CHSS users can now see site-wide announcements on the home page.
- On both the one year and six month Follow Up forms, question 2 (Was the patient readmitted for a non-cardiac operation since completion of the last Post Operative Events Form?), question 3 (Did the patient have a catheter-based intervention since the completion of last Post-Operative Events Form?), and question 4 (Readmission for any pediatric or congenital heart surgery since completion of last Post-Operative Events Form?) have had the text “completion of last Post-Operative Events” replaced with “since discharge” to avoid confusion.
- Subtext has been removed from question 1b (Is the patient alive at one year post Tier 1 Surgery?) and question 4 (Readmission for any pediatric or congenital heart surgery since completion of last Post-Operative Events Form?).
Version 1.0.11, released on July 14, 2023, included bug fixes and quality of life updates, including the ability to customize cookie settings.
- New Features
- Users now receive a notification that our website uses cookies and can customize their cookie settings.
- Bug Fixes
- Fixed logging error where the user IP address was not being stored correctly, and increased the IP address character limit.
- New Features (CHSS)
- File validation no longer requires the hospital name inside the Harvest files to match our records exactly. (For example, different capitalization will no longer causes a mismatch.)
- Bug Fixes (CHSS)
- Empty critical columns were causing an error during the file upload process. Now, empty critical columns are marked as part of the validation results and do not interrupt the upload process.
Lastly, version 1.0.12 was a small release addressing a critical performance issue.
- Bug Fixes
- We downgraded Entity Framework software version from EF6 to EF5 to address general application performance.
In addition to these releases, major changes have recently been made to the Institutional Practice Details (IPD) form. New questions will be in green.
- Question 1: No changes.
- Question 2: Geographic Region Served (Previously Question 5)
- Question 2a: Number of congenital heart program within the city/province
- Question 2b: Number of congenital heart program within the country
- Question 3: Is your institution a stand-alone children’s hospital or part of an adult hospital?
- Question 4: Estimated population number served (now a text field)
- Question 5: Does your congenital heart program currently participate in any prior registry or database dedicated to pediatric and congenital heart disease, either institutional or national?
- Question 5a: Please describe.
- Question 6: Previous year’s hospital case volume of congenital cardiac surgeries (Previously Question 2)
- Question 7: Number of neonatal congenital cardiac surgeries (less than 30 days of life)
- Question 8: Does your program have a Pediatric Heart Transplant Program?
- Question 8a: Number of pediatric heart transplants annually (age < 18 years)
- Question 9: Number of active congenital heart surgeons (Previously Question 3)
- Question 10: Does your institution have a dedicated pediatric cardiac operating room?
- Question 11: Does your institution have a cardiac ECMO program?
- Question 12: Does your institution participate in a formal pediatric and congenital surgical training program?
- Question 13: Does your institution have a pediatric cardiology practice?
- Question 14: Number of trained pediatric cardiologists
- Question 15: Does your institution have a pediatric cardiac catheterization laboratory? (Question 13)
- Question 16: Number of Cardiac Catheterizations performed in the prior year? (Diagnostic and Therapeutic)
- Question 17: Does your institution provide intraoperative TEE service? (Previously Question 18)
- Question 18: Does your institution have an electrophysiology service? (Previously Question 14)
- Question 19: Does your program have an electronic recording ECHO system?
- Question 20: Does your institution have a formal pediatric cardiology training program?
- Question 21: Does your institution have a dedicated pediatric cardiac intensive care unit? (Previously Question 10, changed “exclusive” to “dedicated”)
- Question 21a: If yes, number of beds
- Question 21b: If no, are the pediatric and congenital heart surgery patients cared in an adult cardiac unit or a Pediatric Intensive care unit?
The next application release, scheduled for release at the end of October 2024, is quickly approaching and will include a large improvement to the CHSS upload process.
- New Features (CHSS)
Bi-Annual Reports
The Bi-Annual reports has transitioned to a unique and user-friendly approach that has updated graphs and charts in addition to the tabular exhibits.
Additionally, we have begun the work to create a more modern and usable reporting platform that will provide an interactive way of looking at your data in real time. This new reporting system will provide a mechanism for you to compare your center against the aggregate in multiple ways, including advanced visualizations such as dual-axis line graphs, bubble charts, and others.
Here are some examples of the Bi-Annual Report exhibits
Presentations from 2023-2024
| World Database for Pediatric and Congenital Heart Surgery. 9th Congress of the Asia-Pacific Pediatric Cardiac Society. Cebu, Philippines | 02/24/2023 |
| Creation of a Global Platform for the Treatment of Congenital Heart Surgery “Unification of National Congenital Heart Surgery Databases” 8th World Congress of Pediatric Cardiology and Cardiac Surgery: Database for Pediatric and Congenital Cardiac Care: session 2. Washington DC, USA | 08/26/2023 |
| How the WSPCHS can assist with structuring a platform for data Acquisition across the African Continent: 8th World Congress of Pediatric Cardiology and Cardiac Surgery: World Society for Pediatric and Congenital Heart Surgery and Congenital Heart Surgery with the African Society for Pediatric and Congenital Heart Surgery: Global Initiatives. Washington DC, USA | 08/30/2023 |
| The World Database for Pediatric and Congenital Heart Surgery “Globalization of Pediatric Cardiac Care”: XXXII Congresso Argentino de Cirugia Cardiovascular. Buenos Aires, Argentina | 09/15/2023 |
| Post-discharge Outcomes following correction of Congenital Heart Disease.: CHSS Work Weekend. Cleveland, Ohio (Virtual) | 09/16/2023 |
| Unification of National Congenital Heart Surgery Databases: Moretz Surgical Society Conference. Augusta, Georgia | 03/02/2024 |
| World Database Overview: Workshop for Complex Congenital Heart Disease: National Database Project and Update for Complex CHD. Hanoi, Vietnam | 03/21/2024 |
| Creation of a National Database with Linkage: Workshop for Complex Congenital Heart Disease: National Database Project and Update for Complex CHD. Hanoi, Vietnam | 03/21/2024 |
| World Database on Congenital Heart Disease: Philippine Society of Pediatric Cardiology. Manila, Philippines | 03/23/2024 |
| Linkage of The Korean Pediatrics and Congenital Heart Surgery Database To a Global Quality Platform of Congenital Heart Surgery: The Next Step in Knowledge Unification: World Summit for Pediatric and Congenital Heart Surgery. Bologna, Italy | 06/06/2024 |
| World Database as A Mean to Collect Data in Low Resource Countries: World Summit for Pediatric and Congenital Heart Surgery. Bologna, Italy | 06/08/2024 |
Publications
- St Louis JD, Jacobs JP, Bateson BP, Tchervenkov CI, Austin EH, Kirklin JK. Establishment of a Global Platform for the Treatment of Congenital Heart Disease by “Creation and Unification of National Congenital Heart Surgery Databases and Registries”: It’s Time! World J Pediatric Congenital Heart Surg. 2024 Aug 9:21501351241256607.
- St Louis JD, Collum CS, Pennington JK, et al. The World Society for Pediatric and Congenital Heart Surgery: 2024 Update of the World Database for Pediatric and Congenital Heart Surgery. World Journal for Pediatric and Congenital Heart Surgery. 2024;0(0). https://doi.org/10.1177/21501351241252432
- Bateson, B. P., Deng, L., Ange, B., Austin, E., Dabal, R., Bowser, T., Pennington, J., Sivakumar, S., Lee, C., Truong, N. L. T., Jacobs, J., Cervantes, J., Jagannath, B. R., Jonas, R. A., Kirklin, J. K., & St Louis, J. (2023). Primary or Delayed Repair for Complete Atrioventricular Septal Defect, Tetralogy of Fallot, and Ventricular Septal Defect: Relationship to Country Economic Status. World journal for pediatric & congenital heart surgery, 21501351231204333. Advance online publication. https://doi.org/10.1177/21501351231204333
- Bateson, B. P., Deng, L., Ange, B., Austin, E., Dabal, R., Broser, T., Pennington, J., Sivakumar, S., Lee, C., Truong, N. L. T., Jacobs, J. P., Cervantes, J., Kirklin, J. K., & St Louis, J. (2023). Hospital Mortality and Adverse Events Following Repair of Congenital Heart Defects in Developing Countries. World journal for pediatric & congenital heart surgery, 14(6), 701–707. https://doi.org/10.1177/21501351231176189
Surgery Counts and Collective Counts
Tier 1 Surgeries: index surgeries with expanded data collection including surgery details, discharge, one year follow up, patient death.
Tier 2 Surgeries: All other surgeries with minimal data collection.
Surgery submission as of September 2024
- 25,206 Tier 1 surgeries
- 23,063 Tier 2 surgeries
- 3,123 Total surgeries submitted batched submission
- 48,269 Total surgeries
Interested in learning more about enrolling your hospital in the World Database, click the link below and complete the form. A database representative will reach out to you with additional information:
(http://www.uab.edu/medicine/wdpchs/learnmore)
How can I enroll my hospital?
- Sign and return the WSPCHS Data Use Agreement and Participation Agreement.
- At least one member of the institution should be a member in good standing of the WSPCHS.
Contact Us
James K. Kirklin, MD
DCC Director / Database Chair
james.kirklin@kirso.net
James St. Louis, MD
Database Vice Chair / Secretary
jstlouis@augusta.edu
Jeanne Anne Love
DCC Administrator
Jeanneanne.love@kirso.net
Patricia Potter
DCC Patient Coordinator
Patricia.potter@kirso.net