1. Please would it be possible to tell us about Myeloma Patients Europe
Myeloma Patients Europe (MPE) is an umbrella organisation of myeloma and AL amyloidosis patient groups across Europe. MPE currently has 52 members which are local and national organisations supporting patients based in 33 countries. Our goal is to provide education, information and support to member groups and to advocate at European, national and local levels for the best possible research and equal access to treatment and care. MPE works with various stakeholders: member organisations of MPE, healthcare professionals, reimbursement authorities, regulators, politicians, pharmaceutical companies and the media, to ensure successful collaborations aiming to improve myeloma and AL amyloidosis patient outcomes and reduce health inequalities across Europe.
2. The English version of the Myeloma & AL Amyloidosis European Clinical Trial Navigator was recently launched. Please can you describe this tool
The Myeloma and AL Amyloidosis European Clinical Trial Navigator is an online search tool to learn about and find clinical trials in Europe for myeloma, monoclonal gammopathy of undetermined significance (MGUS), smouldering myeloma and AL amyloidosis. The MPE Navigator can be found at navigator.mpeurope.org.
Accessing up to date and accurate information on academic and industry clinical trials can be burdensome for patients and their families. This website provides patient-friendly information about new trials and medicines approvals and information about clinical research, trial phases, informed consent and factors to consider before enrolling in a clinical trial. The search tool offers an easy way to search for clinical trials in Europe by selecting only the relevant condition, the recruiting status of the trial and preferred location(s). Advanced search allows users to select other characteristics such as the study phase, type of medicine or results availability and randomisation, among others. With this tool, MPE wants to facilitate the search of clinical trials to its community and provide to patients, carers and advocates with a patient-friendly tool not only to find clinical trials but also to know about their availability and location and engage in discussions on clinical trial options with physicians.
3. What makes the Navigator different from other clinical trial search tools?
The Navigator includes disease specific features and clinical trials are linked to specific trial centers, which allows the website's users to easily find clinical trials of interest at specific locations, showed on a map. Eventually, the tool will be available in most European languages, to the contrary of many available tools which are often in English only. The Navigator includes all academic and industry sponsored clinical trials held in Europe in one single platform, while some existing tools are US-specific or company specific. The Navigator is not a trial matching tool. It does not require the user to know and/or share specific clinical data and the information is freely available to everyone. Moreover, the Navigator aims to provide information in a patient friendly manner, while existing registries often use too technical language. MPE is dedicated to providing accurate and up to date information. While the core of the data is based on publicly available resources like clinicaltrials.gov and the EU Clinical Trials Register, the team collaborates with clinical trial sponsors and the medical community to collect and verify data.