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Case study
EmmY Cohort: Long-Term Real-World Evidence in Multiple Myeloma 

The EmmY (Epidemiology of Multiple MYeloma) cohort is a national real-world evidence initiative conducted under the aegis of the Intergroupe Francophone du Myélome (IFM), the leading French academic network specializing in multiple myeloma. The project is implemented jointly by IFM, Kappa Santé, and a consortium of pharmaceutical companies.

The study was proposed to all IFM member centers, with 73 expert hematology centers selected to participate. Its objective is to generate high-quality, long-term real-world data on the therapeutic management of multiple myeloma in France.

The Challenge

Multiple myeloma is a complex and rapidly evolving disease area, requiring longitudinal, high-quality real-world data to understand changes in treatment patterns and patient outcomes over time. To succeed, the project required strong scientific governance, operational rigor, and a partner with deep expertise in real-world evidence generation. 

Coordinating a large national network of expert centers
Ensuring consistent, high-quality data collection over many years
Managing a large number of socio-demographic and clinical variables
Maintaining long-term engagement of participating sites

The APICES / Kappa Santé Approach

Kappa Santé played a central role in the design, implementation, and operational management of the EmmY cohort.

Key elements of the approach included:

  • Design of a national, multicenter, observational cohort under real-life conditions
  • Coordination of 73 specialized multiple myeloma centers across France
  • Annual structured and retrospective data collection to create a dynamic longitudinal cohort
  • Oversight of data quality and completeness across more than 500 socio-demographic and clinical variables
  • Implementation under the supervision of a scientific committee, ensuring methodological rigor and scientific relevance

This structured yet flexible model allowed the study to evolve alongside changes in clinical practice while maintaining data consistency. The EmmY cohort has become one of the most comprehensive sources of real-world data on multiple myeloma in France. 

 

patients included as of February 2023

Seven-year follow-up planned, with over six years of prospective data already available for early participants
A rich database supporting analyses of treatment evolution, outcomes, and care pathways
A robust platform supporting academic research and industry collaboration in hematology

The EmmY cohort demonstrates APICES and Kappa Santé’s ability to deliver large-scale, long-term RWE programs with scientific credibility and operational excellence.

More about the study:

https://pubmed.ncbi.nlm.nih.gov/

PMC11909396 PMID: 40087879