Purpose and Data Collection
The primary objectives of the Myeloma Registry are to:
1. Register, quality-assure, and process data from all patients with myeloma in Central Norway.
2. Provide regular feedback on outcomes to the relevant clinical parties at the region’s health trusts.
3. Support improved diagnosis, follow-up, and treatment of the disease.
4. Monitor complications and treatment costs.
5. Promote research on myeloma.
The registry collects a wide range of data, including symptoms, laboratory results, tissue samples, imaging studies, treatment details, treatment response, healthcare utilisation, and quality of life.
Research and Ongoing Projects
Data from the registry is actively used in research to enhance understanding and treatment of myeloma. Current projects include:
1. Studies of infections among patients with myeloma in Central Norway, including infection types, microbiology test results, and antibiotic resistance.
2. Analyses of cancer and immune cells in bone marrow and blood to understand their interactions and significance for disease progression.
The registry has also contributed to the publication of scientific articles, including a study on the occurrence and prevention of skeletal-related events in patients with myeloma.
“We have been a reference customer for Ledidi since we started in 2021. As of today, we have a large number of data points in Ledidi Core, covering around 1,000 patients. We are very satisfied. What stands out with the Ledidi platform is the user experience and collaboration functionality. I also want to highlight the excellent support we receive when needed.”
— Tobias Schmidt Slørdahl, Clinical Lead, Norwegian Myeloma Registry
Learn more about the Myeloma Registry here: https://www.stolav.no/fag-og-forskning/medisinske-kvalitetsregistre/myelomatoseregisteret#blokk-573061