A Web-Based Registry Framework Linking Transfusion Practice to Long-Term Patient Outcomes: Design and Single-Center Feasibility Study.
- 1Department of Anaesthesiology, Intensive Care Medicine and Pain Therapy, Goethe University, University Hospital Frankfurt, Frankfurt, Hessen, Germany.
- 2University Medicine, Institute of Medical Informatics, Goethe University, Frankfurt, Germany.
- 3Department of Anaesthesiology, Intensive Care Medicine and Pain Therapy, Goethe University, University Hospital Frankfurt, Frankfurt, Hessen, Germany. [email protected].
Abstract
Blood transfusions are among the most common medical interventions performed worldwide. Several comprehensive databases link transfusions to routinely collected health data but do not include the indication and the decision-making basis for a particular administration, nor patient-reported long-term outcomes. We developed a web-based registry for the standardized assessment of transfusion practice and patient outcomes, designed for an observation period of up to 30 years. The framework combines clinical data captured at the point of care with patient-reported outcome measures collected through automated digital follow-up, ensures privacy by design through physical separation of identifying and medical data, and codes diagnoses and procedures in SNOMED CT. We evaluated feasibility in a single-center pilot at Goethe University Hospital Frankfurt (11 September 2024-15 January 2026), with patient-reported follow-up collected through 13 August 2026. A total of 408 patients were enrolled, yielding 1,298 administrations across nine treatment categories in a predominantly cardiac surgical cohort. The pilot demonstrated that the registry integrates into routine clinical workflows, captures the parameters required for guideline-adherence monitoring, and supports sex-disaggregated, descriptive analyses of transfusion practice. Follow-up was completed by 12.5% of patients at 3 months and 15.2% of patients at 1 year; paired baseline-follow-up assessments of physical capacity and frailty demonstrate the data structure for capturing functional recovery. Risk-adjusted benchmarking, network-wide analyses, and donor outcomes are designed capabilities of the framework that were not evaluated in this pilot. The platform is available in 16 languages and participation is open to further institutions.
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BibTeX
@article{nurenberggoloub2026webbased,
title = {{A Web-Based Registry Framework Linking Transfusion Practice to Long-Term Patient Outcomes: Design and Single-Center Feasibility Study.}},
author = {Elina Nürenberg-Goloub and Benjamin Friedrichson and Michael Nordine and Holger Storf and Kai Zacharowski and Jan Andreas Kloka},
journal = {Journal of medical systems},
year = {2026},
month = oct,
doi = {10.1007/s10916-026-02474-2},
url = {https://europepmc.org/article/MED/42902033},
note = {CC BY},
}
RIS
TY - JOUR
TI - A Web-Based Registry Framework Linking Transfusion Practice to Long-Term Patient Outcomes: Design and Single-Center Feasibility Study.
AU - Elina Nürenberg-Goloub
AU - Benjamin Friedrichson
AU - Michael Nordine
AU - Holger Storf
AU - Kai Zacharowski
AU - Jan Andreas Kloka
PY - 2026
DA - 2026/10/21
JO - Journal of medical systems
DO - 10.1007/s10916-026-02474-2
UR - https://europepmc.org/article/MED/42902033
AB - Blood transfusions are among the most common medical interventions performed worldwide. Several comprehensive databases link transfusions to routinely collected health data but do not include the indication and the decision-making basis for a particular administration, nor patient-reported long-term outcomes. We developed a web-based registry for the standardized assessment of transfusion practice and patient outcomes, designed for an observation period of up to 30 years. The framework combines clinical data captured at the point of care with patient-reported outcome measures collected through automated digital follow-up, ensures privacy by design through physical separation of identifying and medical data, and codes diagnoses and procedures in SNOMED CT. We evaluated feasibility in a single-center pilot at Goethe University Hospital Frankfurt (11 September 2024-15 January 2026), with patient-reported follow-up collected through 13 August 2026. A total of 408 patients were enrolled, yielding 1,298 administrations across nine treatment categories in a predominantly cardiac surgical cohort. The pilot demonstrated that the registry integrates into routine clinical workflows, captures the parameters required for guideline-adherence monitoring, and supports sex-disaggregated, descriptive analyses of transfusion practice. Follow-up was completed by 12.5% of patients at 3 months and 15.2% of patients at 1 year; paired baseline-follow-up assessments of physical capacity and frailty demonstrate the data structure for capturing functional recovery. Risk-adjusted benchmarking, network-wide analyses, and donor outcomes are designed capabilities of the framework that were not evaluated in this pilot. The platform is available in 16 languages and participation is open to further institutions.
SN - 0148-5598
SN - 1573-689X
ER -