MPNE2018 conference report short

Melanoma at the Edge.

Knowledge protects.

16th- 18th March 2018 Brussels

MPNE2018 Last weekend, over 100 Melanoma patients, carers and advocates met in Brussels for MPNE2018, the 5th annual conference of the Melanoma Patient Network Europe, MPNE. This year’s ambition was to make the latest scientific and clinical developments in Melanoma accessible to a growing and increasingly diverse audience. Up to 4 parallel tracks offered sessions for various level of expertise and interest, with one track being solely dedicated to Ocular Melanoma, a rare Melanoma that starts in the eye.

Content

Friday started with a QuickStart for first-time participants and overall focused on introductory sessions to Melanoma, the latest and 8th AJCC staging classification and Melanoma therapies with EU market authorization, complemented by two level of statistics for clinical trials and sessions on liquid biopsies and pharmacogenomics as well as coping mechanisms and side effect management.

Building on that, Saturday morning was reserved for a hands-on session in which conference participants read a clinical research publication and graded the findings according to the ESMO Magnitude for clinical benefit scale. The afternoon was reserved for updates on three of the most relevant areas of development in advanced Melanoma, namely therapy options and therapeutical decisions for Stage 3 patients, re-challenges with immune therapy in Stage 4 and highly relevant, the question of when it is possible to actually stop treatment for Stage 4 patients with a complete or a stable partial response. The program was completed by an introduction into the Molecular Biology of Melanoma, focusing on potential mechanism to overcome acquired resistance to targeted therapy as well as the problem of tumour heterogeneity and cancer cells persisting under

MPNE2018 Melanoma at the Edge. Knowledge protects.

1

therapy, sessions on elements of clinical trial designs as in pragmatic clinical trials and qualitative research in clinical trials and sessions on early detection and dermoscopy.

Sunday as the traditional advocacy day started with a short update about ongoing MPNE activities and how to follow them and a knowledge Quiz testing what participants had retained over the weekend. Five parallel advocacy workshops allowed Melanoma patients advocates to exchange expertise on how to organize patient conferences and how to run patient forums, consider how to improve communication between patients and their medical teams, explore a condensed version of our Lean Advocacy workshop in Krusenberg in November 2017 and learn about Adaptive/ Bayesian statistics for potentially more patient-friendly clinical trials.

The conference ended with ‘The best of the network in 2017’, the abstract-based session for advocacy examples that is a traditional highlight among patient advocates and that clearly demonstrated how far the network has developed both conceptually as well as organizationally.

Selected topics included an Irish example for educational opportunities in medicines development for patient advocates, a Romanian country-wide psycho-social support program, a Belgian research project into the quality of Melanoma care, a UK Melanoma patient registry, and conceptual talks on Blockchain as an important new concept in healthcare data management and on critical factors for successful patient advocacy.

Ocular Melanoma Ocular Melanoma being genetically and clinically distinct from Melanoma of the skin, the ocular Melanoma track focused on understanding the biology and genetics of in particular uveal Melanoma and latest research into the genetic and cellular heterogeneity of these tumours. Clinical update sessions on liver-directed therapies and on choroidal biopsies provided context as well as opportunity for in-depth discussion.

MPNE is project partner in UMCURE 2020, a Horizon 2020 project for Uveal Melanoma. A session dedicated to UMCURE2020 introduced the project and provided room for discussion on how patients could optimally benefit from the work and existing resources within UMCURE.

MPNE’s ambition MPNE’s overall aim is to educate Melanoma patients, carers and advocates to the level these themselves consider relevant and desirable. MPNE is a strong believer in Einstein’s quote ‘If you can’t put it simply, you don’t understand it well enough’ and consistently challenges faculty to deliver complex content in an accessible way, while exploring novel educational formats.

MPNE2018 Melanoma at the Edge. Knowledge protects.

2

Patien Thank you

MPNE is grateful for anyone who contributed to the success of this program- especially a driven and dedicated faculty that includes a growing proportion of network members and the many volunteers taking care of organization, logistics and all those small things that make MPNE conferences the ambitious but welcoming and personal educational opportunities for Melanoma patients that we want them to be.

Program

The online version of the complete program is available here https://issuu.com/mpne/docs/mpne2018_program_final

MPNE2018 Melanoma at the Edge. Knowledge protects.

3

MPNE The Melanoma Patient Network Europe is a loose network of European Melanoma patients and carers that operates according to shared principles of patient-focus, constructivism, evidence-base and proactivity and across language and cultural barriers.

Funding

This event would have been impossible without the support of

Program Committee MPNE2018 Bettina Ryll Gilly Spurrier Violeta Astratinei Kari Anne Fevang Fredrik Östman

Organizer MPNEsupport Fjällbo Selknä 152 75597 Uppsala Sweden

MPNE2018 Melanoma at the Edge. Knowledge protects.

4