Bonding Molecular Genotyping and Phenotyping to Outcome Measures in AL Amyloidosis: A European Registry and Sample Sharing Network to Promote Diagnosis and Management of Light Chain Amyloidosis (EUREKA)

What this Trial Is About

Researchers are establishing a European registry and sample sharing network called EUREKA to collect new cases of AL amyloidosis from referral centers and their satellite sites across Europe. This observational study aims to use advanced molecular technologies and big data analysis, including artificial intelligence, to better understand the disease mechanisms, improve early diagnosis, and guide treatment decisions. The study also seeks to describe the natural history of AL amyloidosis in patients receiving modern anti-plasma cell therapies and to refine methods for detecting minimal residual disease after treatment. The study involves creating a biorepository and sample sharing network to study disease-causing light chains and plasma cells using cutting-edge molecular techniques. A dedicated site will support the consortium with big data and AI applied to health data. Participants will be followed over time at participating centers, with data collected to assess outcomes such as mortality and hematologic relapse in those achieving complete response to therapy. Participants will be involved through regular follow-up visits at their treatment centers, with collection of clinical data and biological samples. Researchers will monitor outcomes including mortality at 24 months after diagnosis and rates of relapse in patients with minimal residual disease. The study duration allows for long-term observation to better understand disease progression and response to treatment in a real-world setting.

A EUropean REgistry and Sample Sharing networK to Promote the Diagnosis and Management of Light Chain Amyloidosis (EUREKA)