Mpne 2015 press release

MPNE 2015 ‘The risk of NOT taking risks in Melanoma’ 24th- 26th April 2015 Brussels Press release During the last weekend of April, 90 participants- Melanoma patients, advocates, clinicians and representatives of regulatory and HTA bodies as well as the pharmaceutical industry gathered for MPNE 2015, the annual conference of the Melanoma Patient Network Europe.

This year’s topic was RISK in the context of new therapies in Melanoma and the different stakeholders’ perceptions of what risk constitutes, aptly summarized under the title ‘The risk of NOT taking risks in Melanoma’.

Participants- 2/3 of them advanced Melanoma patients/carers- from 19 countries registered for the event that started Friday afternoon with a series of workshops in previously identified areas of interest for MPNE advocates- Dermoscopy, psychosocial support and therapies in Stage 3 and Stage 4 Melanoma.

In addition, two work sessions, each of them part of projects with MPNE involvement, took place: 1. Evaluation of a risk/ benefit tool developed by the EMA and a 2. Focus group on patient-centric clinical trial design, as part of the IMI project GetReal.

Outcomes of the workshop and the work groups will be documented independently.

Saturday’s focus was on the differences in risk/ benefit perception between different stakeholders.

The first session looked at the concrete risk as perceived by the persons directly in contact with innovative therapies- patients (Lori Murdock, Melanoma Network UK), carers (Pan Pantziarka, George Pantziarka Trust, UK) and clinicians (Bart Neyns, Melanoma oncologist, Brussels) In Melanoma, long-term survival of our patients critically depends on successful innovation. The theme of the second session was therefore the risk inherent to innovation, from the perspective of the Innovative Medicines Initiative, Europe’s largest public-private partnership (Michel Goldman, previously IMI), an assessor (Jorge Carmarero, Spanish Medicines agency) an the pharmaceutical industry (Brendan Barnes, EFPIA), as well how to leverage the potential of new big data sets (Nathalie Kayadjanian, Science Europe).

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MPNE 2015-­‐ The risk of NOT taking risks in Melanoma.

The third session then looked into possibilities how to measure and mitigate risk, by early and systematic data gathering (Edna Venneker, NL), a concrete tool developed by the EMA to measure risk/ benefit assessment in patient populations (Francesco Pignatti, EMA) and a patient perspective on how risk perception can evolve over time (Geert Bakker, Inspire2Live).

The fourth session was dedicated to a presentation about the GetReal project, followed by a podium discussion with different stakeholders on clinical development more focused on patients’ needs, both in terms of the risk patients were willing to take as well the clinical trial design models patients were willing to accept.

A patient quote about the current situation of clinical trials in Melanoma summarizes the day“a patient would never come up with the concept of a randomised controlled trial: it’s an alien concept”.

The advocacy day on Sunday offered the opportunity to update advocates on the progress made since 2014 (Bettina Ryll, MPNE and AnaMaria on ‘Focus on Romania- 1 year after’) and to present ongoing and planned initiatives- a research project into Melanoma susceptibility (Antonella Romanini, ACM, Italy), MPNE communication strategy (Lori Murdock, Melanoma Network UK) and education strategy (Gilly Spurier, Mélanome France). Violeta Astratinei (Melanom Romania) shared her experience with the EUPATI program and Vlad Voiculescu addressed the problem of major inequalities in access to cancer drugs in Europe, presenting ‘The missing cancer drugs initiative’ whose founder he is.

In the following weeks, we will finalize the conference report and a video documentary collecting the different aspects of risk/ benefit assessment.

The outcomes of the Friday’s workshops and Sunday’s discussions will form the basis for concepts for future MPNE actions.

Last but not least, we would like to thank our speakers, participants and funders for their motivation, a high level of engagement and their willingness to contribute in their own free time- for a better future in Melanoma.

more about the motivation for this conference can be found online: http://www.melanomapatientnetworkeu.org/motivation.html

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MPNE 2015-­‐ The risk of NOT taking risks in Melanoma.

Melanoma Patient Network Europe We are a network of European Melanoma patient advocates with a vision of access to prevention, early detection and effective treatment in Melanoma for all Europeans. We systematically and pragmatically address the problems of the European Melanoma community in a constructive, result-orientated and collaborative manner. http://www.melanomapatientnetworkeu.org

The event MPNE 2015

24th- 26th April 2015 Hotel Marivaux Boulevard Adolphe Max 98 1000 Brussels Belgium http://www.hotelmarivaux.com

Organizer MPNEsupport for Melanoma Patient Network Europe Bettina Ryll Kristin Bryon Org. 802492-1069 Fjällbo Selknä 152, 75597 Uppsala, Sweden

This event was made possible through the support of-

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MPNE 2015-­‐ The risk of NOT taking risks in Melanoma.