EMPOWERING MYELOMA ADVOCACY ACROSS EUROPE


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Impact of AL amyloidosis on health-related quality of life

MPE is conducting a research project to examine the impact of AL amyloidosis on health-related quality of life of patients, and to gain insight into their experiences with diagnosis and treatment. The primary aim of the project is to scope unmet medical needs, as well ways in which these could be addressed. The results will serve as the basis of a scientific publication, and they will inform MPE’s future decisions regarding how to best address the needs of the AL amyloidosis patient community.

 

Participation in the project involves filling out a questionnaire, followed by an optional interview. The questionnaire will be available as an online survey, participants will receive the link to access the survey via email. The follow-up interview will up to 60 minutes long and will take place via Zoom. The data collected will be anonymised and no quotes will be attributed to patients without their consent.

 

In case you would like to participate, please read the information sheet and fill out the form below. Should you have any question, please contact MPE’s Project Officer, Lili Gundelach at gundelach@mpeurope.org:

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  • 1. I confirm that I have read and understand 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 info@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 study 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 study and made available only to the MPE staff taking notes and preparing the report.