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Lenalidomide Maintenance Survey Research

Science News // 20th January 2020

Myeloma UK are seeking views from patients in relation to the new treatment of Lenalidomide (Revlimid ®) Maintenance. This is to help shape our input to the decision on whether this treatment should be available to patients on the NHS in the UK.

Myeloma UK submits evidence to drug approval bodies to explain how a treatment can benefit patients. As well as using clinical trial information to inform our submission, we also want to say what patients think about the potential of the new treatment and what matters most to them.

We anticipate that this new treatment will be appraised by the drug approval bodies in 2020. To help us capture patient insight we would like patients to complete a survey on the new treatment.

The survey should take 15 minutes to complete and can be found here.  The survey will be open from the 20th January until Friday 7th of February.

Lenalidomide maintenance is a new treatment which is given to patients following a high-dose therapy and stem cell transplantation (HDT-SCT). Many patients may have already received lenalidomide maintenance as is tested in a clinical trial called Myeloma XI.

As the position of this new treatment is for HDT-SCT eligible patients we are looking for views from patients who have received or are going to receive a High-Dose Therapy and Stem Cell Transplant. We are also very keen to hear the views of patients who were involved in the Myeloma XI trial.

If you would like to take part in our survey please follow the link provided.

Sarah McDonald, Director of Research at Myeloma UK:

“Patient insight is vital to fully understand how a new medicine impacts the quality of life of patients. This new treatment has the potential to be a significant addition to the Myeloma treatment pathway for patients who are eligible for high-dose therapy and stem cell transplantation (HDT-SCT).

We are keen to hear the views from as many eligible patients as possible.  Patients, can provide unique knowledge about what it’s like to live with a condition. These insights will go a long way to informing our evidence submission to the drug approval bodies.

Patient involvement plays an essential role in contributing the needs, preferences and experiences of patients. It can shape the questions asked about a technology and ensure that issues that matter most to patients are considered.”

If you have any questions or comments on the survey please email policy@myeloma.org.uk. If you have questions about treatment please call the Myeloma Infoline on 0800 980 3332 during office hours, Monday to Friday.