There is a growing international interest in national registries on lower limb amputations, prostheses and outcomes. In Sweden, a system of about 100 National Quality Registries provides the Swedish health care system with the opportunity to monitor quality and outcomes, and to provide data for registry-based research. SwedeAmp, the Swedish registry for lower extremity amputations and prostheses, was established in 2011. Any Swedish National Registry is connected to a competence center for data storing/handling, and each registry is annually monitored for financial support from the government.
In SwedeAmp data is registered voluntarily and on-line by clinicians, and registrations contain individual patient level data for amputations, prostheses and outcomes. The data is stored at the competence center and all users have access to data from their unit. Up to 2023, SwedeAmp contained data for around 12 000 patients, 17 000 surgical procedures,7 000 prosthetic devices and 4 500 outcomes.
Access to data for research purposes requires a formal process including ethical approval. The aim of this symposia is to describe the pros and cons inherent with research performed on registry-based data by describing examples evolving from the SwedeAmp dataset.
In this symposium, three researchers will briefly present their currently on-going research and especially reflect on their experiences using registry data, pros as well as cons. The presenters represent different disciplines, units and countries and they applied for SwedeAmp data between year 2021 and 2024.
Statement of the objective / learning objectives
To gain knowledge in the organization of a national health registry such as SwedeAmp, and to gain a deeper understanding of factors that will influence research based on registry based-data.
