Effective Manuscripting about Patients with Congenital Cardiac Malformations

Background: In 2003, the Kompetenznetz and the Nationales Register für Angeborene Herzfehler (KNAHF/NRAHF) were founded, and 55,000 (of 300,000) AHF patients have consented today to share their medical data for scientific evaluation. Growing imbalances in health care and state budgets make data collection for non-mainstream research purposes increasingly difficult. We established a way to improve chances to accumulate data with a fraction of the formerly required resources.

Method: Patients: for single site studies, students spend years to collect information about defined patient groups. Multisite studies require extensive networking activities among concurrent institutions. Keeping the actual information of 55,000 register patients is even harder: neither resident specialists nor hospitals’ archive workers find the time to extract all the reports about the register participants for sending them to the registry. This causes relevant gaps in the data collection.

Methods: The Kompetenznetz sent us a list of our 800 register participants, their register IDs and PDFs of their written informed consents for scientific evaluation of their medical records. We assigned our internal ID numbers, enabling our digital archive software to form PDFs named with the register ID that contained the relevant reports. Besides the MHH findings, the archive holds most of the resident specialists’ reports. These files are transmitted to the register. They get pseudonymized and de-individualized by dedicated personnel and are available for data extraction. The administrative effort is worth the advantages gained by getting more data that was otherwise entered.

Results: The electronically collected data are merged with otherwise accumulated registry patient data and quality assurance data. The resulting data pool for evaluation is many times larger than single site data, enabling better founded analyses. For example, pulmonary valve implantation data can be used multiply, by many sites—about this patient group, the third publication with different evaluations is currently written.

Conclusion: Using the infrastructure of KNAHF and NRAHF keeps important outcome research with reasonable effort feasible.

Publication History

Article published online:
28 January 2023