Bonding molecular genotyping and phenotyping to outcome measures in AL amyloidosis: A EUropean REgistry and sample sharing networK to promote the diagnosis and management of light chain Amyloidosis
Immunoglobulin light chain (AL) amyloidosis is a rare, progressive disease caused by antibody fragments called light chains, which are produced by plasma cells in the immune system. Amyloid light chains target vital organs and form deposits. Therapy is based on anti-plasma cell drugs, aiming at reducing light chain production, restoring organ function, improving quality of life, and extending survival.
Members of our consortium made substantial contributions to the diagnosis, treatment and management of AL amyloidosis. However, previous studies on the natural history of the disease were limited by low numbers of analysed patients, limited representativeness of patient cohorts, lack of molecular data, and analysis approach.
In the frame of the EUREKA consortium, we will create a single patients’ registry collecting all new cases of AL amyloidosis evaluated at four referral centres across Europe or at their satellite sites, linked to a cross-border biobank and sample sharing network for the study of both disease-causing light chains and plasma cells with advanced molecular technologies. A fifth site will support the consortium with big data analysis and artificial intelligence applied to health.
Goals
- Definie the impact of advanced molecular technologies to promote early diagnosis and guide therapeutic choices
- Describe the natural history of the disease in a representative cohort of AL patients in the contemporary era of effective anti-PC therapies
- Investigate and refine novel advanced technologies to detect with high sensitivity residual disease-causing PCs in patients responding to therapy.
Besides deepening our current understanding of the biology of AL amyloidosis, the data produced within this study will be instrumental in promoting early diagnosis, personalizing individual patient management and in the design of future clinical trials.

Project details
- Type
- Research project
- Research areas
- aiHealthLab
- University
- FHNW School of Life Sciences / Institute for Medical Engineering and Medical Informatics
- Funding
- EU Horizon 2020 EJP N°825575
Swiss Science National Foundation - Running time
- 2023-2026
Contact

Prof. Dr. Enkelejda Miho
- Phone
- +41 61 228 58 47
- enkelejda.miho@fhnw.ch
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- Institute
- Institute for Medical Engineering and Medical Informatics
- Research field
- aiHealthLab

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- Institute for Medical Engineering and Medical Informatics
- Research field
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- Institute
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- Institute
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- Research field
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