EMPOWERING MYELOMA ADVOCACY ACROSS EUROPE


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Horizon 2020 CARAMBA is a project consortium investigating an innovative immunotherapy for the treatment of multiple myeloma, known as Chimeric Antigen Receptor T-cell therapy (CAR-T). Through strategic collaboration with a wide-range of stakeholders, including Myeloma Patients Europe, the consortium aims to ensure the streamlined transition of CAR-T from the laboratory through to multiple myeloma patients in the clinic.

 

CARAMBA is specifically looking at targeting CAR-T at a specific protein called SLAMF7 which is expressed on the surface of myeloma cells. The safety and efficacy of SLAMF7 specific CAR-T cells will be assessed in multiple myeloma patients through a small Phase I/II clinical trial involving around 30 patients. In the clinical trial, a type of white blood cell which makes up part of the immune system (T-cells) will be collected from patients and equipped with a chimeric antigen-receptor (CAR). When reintroduced into patients’ bodies, it acts like a sensor boosting the ability of the T-cells to find and destroy myeloma cells. Clinical trials started in four cancer centres in Europe – Würzburg, Pamplona, Milan and Lille.

 

As well as the clinical aspects, the project consortium will also collaborate on regulatory and access issues and on ensuring that patient preferences are reflected in the project. In this context, MPE is conducting two research projects to gather the patient perspective on the use of Patient Reported Outcomes (PRO) in CAR-T clinical trials and the patient and caregiver experience of the socioeconomic burden and impact on quality of life-related to CAR-T treatment and side effects.

 

Patients and caregivers will be invited to share their experience in a focus group discussion. Their feedback will help understand patient needs and the impact CAR-T treatment has on their lives as well as help future patients make informed choices regarding treatment options which will help better design future CAR-T clinical trials.

 

MPE will hold a focus group to find out more about CAR-T from a patient perspective. We will be asking questions which relate to two similar areas – quality of life measurement within CAR-T clinical trials and the wider impact of CAR-T on individuals and their partners, family members, carers, or friends.

 

The focus group discussions will last for 75 minutes each. You will be compensated for your time at a rate of €62.50 / hour, plus any time that you need to prepare or debrief.

 

Project one

The questions for this project will be around the way that quality of life is measured within a CAR-T clinical trial. During the focus group we will examine some of the questionnaires that have been used within CAR-T trials and think about what we like and dislike. This information will be useful for companies who are developing clinical trials for CAR-T in the future. This part of the focus group will last for 75 minutes. Only myeloma patients that have or are currently participating in a CAR-T clinical trial will be able to participate in this focus group. Those patients who have enrolled in a CAR-T clinical trial but could not receive treatment with CAR-T will be able to participate in project two only.

 

Project two

This project is about the impact of having a CAR-T treatment. The focus group will ask questions about some of the practicalities of treatment such as transportation to treatment centres, accommodation, reimbursement of costs, hospitalisation time, time off work, and other social impacts. This part of the focus group will last for 75 minutes. Myeloma patients or caregivers that have or are currently participating in a CAR-T clinical trial (despite if they received the infusion or not) will be able to participate in this focus group.

Both focus group discussions will be held via zoom, recorded, transcribed, and then analysed using thematic analysis. A report will be generated and used for MPE to advocate for better patient involvement within trials. For more information, questions, or thoughts please contact research@mpeurope.org

Both focus groups will be held according to participants availabilities.

 

How to enrol

To participate, please read this information sheet and complete the form below:

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    1. I confirm that I have read and understood the information above. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily. (All questions can be sent to research@mpeurope.org).

    2. I understand that my participation is voluntary and that I am free to withdraw at any time, without giving any reason.

    3. I understand that my participation in this focus group will be confidential.

    4. I understand that anonymised data may be shared publicly.

    5. I understand that if some of my views are quoted in a report or otherwise published, this will be done anonymously unless I consent to be identified.

    6. I understand that my views will be video recorded for the purpose of the focus group and made available only to the MPE staff and a contracted transcriber preparing the report.

    7. I understand that MPE cannot guarantee the disclosure information shared in this focus group discussion by other participants.

    8. I agree to take part in the focus group.

     

 

More information on CARAMBA:

 

More information on CAR-T:

 

More information on Horizon 2020: