Report on Myeloma Patient Perspectives

 

The report on Myeloma Patient Perspectives explores the patients’perspectives on current approaches to myeloma treatment and care across Europe and their role in future research.
• It has been developed by MPE to bring together the many complex issues faced by myeloma patients and to provide key recommendations to inform an agenda for myeloma patient groups and bring about the change required in their countries as well as across Europe towards improving outcomes in myeloma.
• These recommendations are given in five critical areas on what can be done to improve access, better involve patients in research and meet their needs more effectively and patient involvement in decisions that affect them directly. It calls for ensuring that patients are equal partners in research and are given a formal role in the creation of policy that affects them.
Please download the report and its executive summary here. If you have trouble downloading the documents, please send an email to info@myelomapatientseurope.org and we will send you an electronic copy.

Early diagnosis in myeloma

 

Although myeloma is not a very common cancer, it represents 1% of all cancer diagnosis and 84.000 are living with it in Europe. In the last decade or so, the emergence of new effective treatments has significantly improved outcomes for patients both in terms of quantity and quality of life.

However, some studies have shown that between 10% and 20% of patients die within 60 days from diagnosis. One possible reason for this could be the fact that patients are frequently diagnosed late; due mainly to the presence of unspecific symptoms and lack of awareness among general practitioners (GPs) and general population. In those who survive beyond 60 days, a prolonged delay before diagnosis is also associated with a significant deleterious impact on the clinical course of myeloma.

It is for these reasons that MPE intends to develop a comprehensive project at a European level that aims to improve an early and accurate diagnosis by pursuing actions at three different levels: awareness, education and advocacy.

 

Download the “Early Diagnosis in Myeloma” paper here:

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Clinical Trial Charter

 

The MPE Charter on Clinical Trials was produced as part of a very successful first Masterclass on Clinical Trials which took place in Edinburgh in November 2012.

After circulating the final draft during the last AGM (Madrid, 14.04.2013) and gathering members’ feedback, we are very pleased to inform you that its publication is now available and will be distributed among key audiences.

Many thanks to all of our members who gave input during the Masterclass and for the additional input in the months that followed.

The Clinical Trial Charter will also be translated as soon, and into as many languages, as possible.

 

Download Clinical Trial Charter here:

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