The Pediatric Heart Diseases Data Registry Core provides access to rich registry data from surgical, catheter-based and electrophysiologic studies and interventions for multiple pediatric heart diseases. The data represent over 300,000 event outcomes and have been collected from over 140,000 patients since 1982.
This core provides consultation assistance and can run queries and compile data for research investigators wishing to perform outcome studies related to pediatric heart diseases. All requests will be subject to review/approval to ensure match with an outcomes research scope and to ensure all compliance requirements are met.
Collection of these data were made possible by the Pediatric Cardiac Care Consortium (PCCC), a non-profit foundation whose mission is to improve the lives of patients with pediatric acquired and congenital heart disease by answering key questions about diagnoses, treatments, and outcomes, and thereby empower patients, families, clinicians, and policy-makers to make informed decisions and improve quality of care. Dr. Lazaros Kochilas, President of PCCC, will review all data requests submitted to the core and will provide approval contingent upon meeting specified criteria, including confirmation of proper scope of data use (i.e. outcomes research) and adherence to all compliance related requirements.
Learn more about the PCCC here.
Recordings of from the conference sessions from the first annual research meeting on Long-Term Outcomes of Patients with Congenital Heart Disease can be found at the links below:
Rates are based on the complexity of the project, which includes data size, technical assistance to run queries, compiling of data, cleaning of data set, project guidance, oversight and administrative responsibilities. The final estimate, which will be done by calculating the total patients required for the project, will be provided by Dr. Kochilas after a review of the aims and scope of the proposed outcomes research. External projects have an added 10% administrative fee.
The Base fee for a project is $4,315, external collaborators rate at $4,747
(Base fee is calculated for a project with approximately 1,000 patients or less. If a project exceeds this amount the base fee will be increased and collaborator will be consulted.
Analysis assistance fee is $45/hour, external collaborators rate at $50/hour
Please contact the PHDD Registry Core (firstname.lastname@example.org) to discuss using the PCCC database. Full detail, including a complete list of existing variables for analysis, is available upon request .
Once you have discussed your project, before accessing the database you will need to complete a Data Use Agreement. You will be directed to use this form when necessary.
Please see the timeline of how our service works with collaborators requesting data. Contact Amanda Thomas for full details including a complete list of variables available for analysis.
The Pediatric Heart Diseases Data Registry Core is graciously supported by Children’s Healthcare of Atlanta and Emory University with collaboration of Participating PCCC Centers (PDF of the PCCC Participating Centers). When presenting or publishing work completed using data from the PCCC, please include “Children’s Healthcare of Atlanta and Emory University’s Pediatric Heart Disease Data Registry Core” and the PCCC centers in the acknowledgments. Suggested text:
This study was supported by the efforts of the Children’s Healthcare of Atlanta and Emory University’s Pediatric Heart Disease Data Registry Core in preparing the data to conduct this research. Additionally, we thank the program directors and data collection coordinators from the participating PCCC centers; without their effort and dedication, this work could not have been completed.
If your publication utilizes NDI/UNOS linked data then you will need to include the text below in your funding source.
This work was supported by the National Heart, Lung, and Blood Institute R01 HL122392‐04.
*If you are unsure if your project/publication should include the text above in the funding please contact Amanda Thomas.