The Myeloma Registry in Central Norway: A vital tool for improving the treatment of bone marrow cancer

The Ledidi Team,

The Myeloma Registry in Central Norway is a medical quality registry established to improve care for patients with myeloma, a form of bone marrow cancer. The registry is anchored within the Central Norway Regional Health Authority (Helse Midt-Norge), with St. Olavs Hospital responsible for data processing. Through systematic collection and analysis of clinical data, the registry contributes to a deeper understanding of the disease and its treatment.

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