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Improving outcomes for patients with AL amyloidosis

This project was conducted between 2009-2011.

Aim of project

This project monitored chemotherapy for AL amyloidosis between local hospitals and the National Amyloidosis Centre to improve clinical care, knowledge, and networking between local and specialist centres.

Project summary

Amyloidosis is a disorder of protein folding that progressively disrupts the structure of tissues and organs throughout the body. Systemic AL amyloidosis is the most common, with several hundred new cases in the UK each year. It is also by far the most serious type, lying within the spectrum of MGUS to frank myeloma, it is inexorably progressive and until the mid-2000s the median survival was just 6-15 months. Chemotherapy treatments for amyloidosis are derived from those used in multiple myeloma.

This project examined quality of life before, during, and after chemotherapy, as well as blood and organ response to treatment, and chemotherapy-related side effects in all new patients with AL amyloidosis attending the National Amyloidosis Centre. The project included patients with advanced disease who had largely been excluded from clinical trials. It was found that survival increased among those patients who responded rapidly to chemotherapy. As a result of these findings, the National Amyloidosis Centre enacted a significant change to their routine clinical practice to ensure that all amyloidosis patients are comprehensively reviewed at an earlier stage so that their treatment can, if necessary, be changed or intensified.

This project was the largest prospective study ever conducted in AL amyloidosis which generated a wealth of information relating to patients with advanced disease.

Who was involved with the project

The principal investigator was Dr Wechalekar at the University College London Medical School.

How this project will help Myeloma patients

In addition to improving patient assessment pathways in the UK, this project has led to the planning of an international trial to assess the impact of treatment for patients who have traditionally been excluded from most trials.

This study has helped to improve contact between physicians and nurses in the UK who work with patients with amyloidosis. This can help to ensure patients are accessing the most effective chemotherapy treatments at the earliest opportunity.

Acknowledgements and funding

This work was funded by a Myeloma UK Health Services Research grant.

Outputs

You can find out more about amyloidosis and watch Dr Wechalekar providing an overview of treatment options here: https://www.myeloma.org.uk/understanding-myeloma/related-conditions/al-amyloidosis/