ALchemy

The study began in 2009 to address unanswered questions relating to patients with AL amyloidosis.

An unmet need

Prior to ALchemy, there had been no large systematic studies following and monitoring patients with systemic AL amyloidosis from the time of diagnosis (prospective studies). Studies that had been carried out were small and usually did not include patients with severe disease. Many patients were lost to follow up after their initial visits to the NAC. It was therefore hard to assess accurately exactly which chemotherapy treatments patients around the country were receiving, what side effects they experienced and how the disease and treatment impacted on their quality of life. ALchemy aimed to fill these gaps in our knowledge and to help us to improve our clinical practice accordingly. Our goal was to gain a 'real world' picture of the disease by close monitoring of all patients with systemic AL amyloidosis regardless of age or disease severity.

Who is eligible for ALchemy?

All patients diagnosed with systemic AL amyloidosis in need of treatment are eligible for enrolment in ALchemy if they are able and willing to give informed consent and have had no (or minimal) prior therapy.

ALchemy monitoring

Patients enrolled in the study are monitored closely by NAC clinical research nurses. Before ALchemy started, our standard follow-up protocol involved an NAC assessment at diagnosis then every 6 months.

The ALchemy protocol involves:

• Evaluation of patients' response to treatment after 3 months, after just 3 cycles of treatment.
• Requesting that the patients' local treating physicians and nurses supply us with data regarding chemotherapy and other treatments and side effects after every cycle (every month). We provide a form for the data.
• Requesting that patients send us blood samples after every cycle (every month) so we can check free light chain (FLC) concentrations and serum protein electrophoresis (SPE). We provide the blood sample tubes and pre-addressed padded envelopes and patients can go to their GP or local hospital clinic to have the blood drawn.

We wanted to assess the feasibility of this intensive, early monitoring approach. We also wanted to evaluate whether such early assessments could lead to better treatment outcomes.

ALchemy has already led to improved patient care

Soon after the ALchemy study began, it became clear that patients were benefiting from the more intensive monitoring with the extra appointment after the first 3 cycles of chemotherapy, monthly blood samples and treatment forms from the local doctors. As a result, we have incorporated all of these into our standard clinical practice for all patients.