Thursday, 27th April
arrival participants for the workshop on Friday morning.
Friday, 28th April
Precision Medicine and DRUP- like clinical trials
Separate program and application
Friday, 28th April
Melanoma in children and young patients is hard to diagnose, still lacks treatment options and outcomes too often depend on the patients' living place. Melanom Romania recently joined the MELCAYA EU project as a project partner to precisely work on these issues. MELCAYA builds knowledge on genetic and environmental triggers, how to ensure accurate diagnoses, non-invasive early detection and AI, innovative therapies, and most importantly, how all these could reach patients living in different countries. Melanom Romania's role in MELCAYA includes ensuring connection to the wider European Melanoma community, so if you want to be involved, please let Violeta know!
Welcome to the session and MPNE2023!
Violeta Astratinei, MELCAYA project partner AMeR- Melanoma Romania and MPNE
Bettina Ryll, MPNE
Short introduction to the MELCAYA project
Susana Puig, MELCAYA project coordinator
Keynote lecture: Melanoma Risks- Familial Melanoma and Genetic Predisposition
Susana Puig, MELCAYA project coordinator, Clinic Barcelona University Hospital
Who is more likely to get melanoma? Melanoma is linked to both environmental and genetic factors. The role of melanoma susceptibility genes is known in adult patients but still under debate in children and adolescent melanoma. Understanding the risk of melanoma helps to prevent and detect melanoma as early as possible.
Challenges in Melanoma Diagnosis and a Second Opinion Platform
Daniela Massi, MELCAYA partner, University of Florence
Why is melanoma sometimes difficult to diagnose, and what makes melanoma in children and adolescents even more challenging? Effective interaction between histopathologists across Europe via digital platforms could improve diagnostic accuracy. Daniela will present general challenges in melanoma diagnostics, the platform for a second opinion, and how patients could benefit.
Healthcare Strategies and Implementation
Laura Sampietro-Colom, MELCAYA partner, Clinic Barcelona University Hospital
The work of Laura and her team is to develop tools and guidance for Health Authorities to support the decision-making process on early diagnostics and prevention of melanoma in children. This will include a Health Technology Assessment (HTA) framework for assessing innovative technologies targeting melanoma in children, including ethical and social issues.
Why is this important for patients? Health Technology Assessment is how new early diagnosis tools, therapies, or other healthcare interventions can reach patients, so the adoption of innovation highly depends on how good are the HTA frameworks in every European country.
Q&A and discussion: making a difference in CAYA
Welcome coffee and registration
Conference opening MPNE 2023
45' MPNE QuickStart
We know that many join us for the first time. MPNE QuickStarts give an introduction to Melanoma as a cancer, the therapies in use and the different Melanoma stages.
Melanoma in a nutshell
Know your Stage!
Fredrik Östman and Ian James
Update Stage 4 Melanoma
A large proportion of MPNE2023 participants are Melanoma patients with Stage 4 Melanoma (55% to be precise). For this reason, we will start with an update on what is currently available as treatment options for Stage 4 Melanoma. While the outlook for Stage 4 patients has improved, treatments still don't work for every patients- which is why the second presentation will be about recent research into response to immune therapy.
Know your Drugs! Understanding Melanoma Therapies
Bettina Ryll, MPNE
Treatment options for Stage 4 Melanoma
James Larkin, Royal Marsden London, UK confirmed
Who responds to LAG3/PD1 inhibition?
Jani Huuhtanen, iCAN Digital Precision Cancer Medicine Flagship, Helsinki, Finland, confirmed
Setting up the advocacy maker space
The MPNE advocacy maker space
Time for something new! Community feed-back from the last meetings was that people wanted an Advocacy QuickStart to get up to speed on useful advocacy tools for their work and more time to learn from each other's experiences.
Advocacy is about change and about building something new, so experimenting and learning are important- things that did NOT work often have important insights about places of resistance in a system. A toolbox of 'thinking tools' and methods is therefore helpful to move faster- which is why we borrow the maker space concept.
Turn your experience from advocacy work into a learning experience for your colleagues: what do you want them to be aware of to make them succeed? This is an opportunity to be creative- you can obviously make a poster but think about how you can let others experience and test what you've learned.
Test some tools our community has developed over the years: check the quality of patient information with the V2A2 tool, negotiate a research partnership with our research partnership canvas, help us with building an MPNE impact assessment tool, learn how to draft a patient engagement strategy, contribute to the patient pathway and describe the real impact Melanoma had on your life via the person I worry about and more!
Advocacy Speed dating with Ian James- in parallel to the maker space
For those of you who are already getting worried- our advocacy speed dating is the most fast & fun way to get to talk Melanoma advocacy to a large number of people in a very short amount of time.
Coming for the first time? You'll have met the Melanoma advocate 'dinos' by the end of the session!
Been here many times before? You will know who is new, have heard some new perspectives and know whom to help!
20.00 Buffet dinner at the conference venue
Saturday, 29th April
8.00- 8.45 breakfast
Novel developments in drug development
While the outcomes in metastatic cutaneous Melanoma have dramatically improved over the last decade, we still lose too many of our community, in particular those with Rare Melanomas. Better research- more relevant, faster- and a more effective integration of research findings into clinical care are therefore important if we want to improve outcomes in Melanoma.
This session will look at efforts to optimise early drug development and the DRUP-like Clinical Trials that are an interesting phenomenon of academically initiated precision medicine trials that provide options for patients whom all lines of treatment have failed.
Optimising Early Drug Development- UK initiative
Chris McCabe, Professor of Health Economics, Queen's University Belfast, Ireland, confirmed
DRUP-like Clinical Trials- how do we get more and better options for more patients? Integrating research into clinical care
Kjetil Tasken, Director of Institute of Cancer Research at Oslo University Hospital, Norway, confirmed
A European Health Data Space that works for patients- because if it doesn't work for patients, it will work for no one.
Gilly Spurrier and Bettina Ryll
In the current discussions around the EHDS and the 2dary use of data, every party has very clear ideas about the value that health data will provide to them. Apart from the convenient 'data altruism' narrative, very little attention is paid to patients- those who first have to consent to their data being used in the first place.
Our community takes a realistic rather than idealistic-naive position: we believe that patients, just as every other stakeholder group, have valid expectations with regards to the value that the usage of their data has to deliver and Gilly will share what that would look like from her perspective. With the individual holding the last control over their data, the control in the system is maximally distributed, protecting the community. Invidual consent thereby becomes the lynch pin around which the entire EHDS revolves- and patient engagement a critical enabler- Teo will share some of her work around the topic, please also read her blog. And last but not least, no system will be fail-safe- patients and societies therefore need the technological and governance solutions to ensure that misuse should it happen will effectively be punished- Philippe will share some of the work of The Human Colossus Foundation on the topic.
10' Introduction: GILLYWEED- data that works for patients
The EHDEN- European Health Data and Evidence project
Nigel Hughes, EHDEN, Belgium, cancelled
10' People Have the Power: Patient empowerment in the European Health Data Space proposal
Teodora Lalova-Spinks, Doctoral Researcher at KU Leuven, confirmed
Read Teo's recent blog on the same topic
10' Trust by design- technical and governance solutions to manage risks inherent to data sharing
Philippe Page, The Human Colossus Foundation, confirmed
10.30- 11.00 Coffee break
Early access to new therapies- Early Access/ Compassionate Use Programs
Fredrik Östman and Bettina Ryll
Background and motivation
Early Access- also called Compassionate Use- programs are an important way to access new therapies for Melanoma patients in the dangerous access gap between the end of a confirmatory clinical trial and reimbursement.
While the evaluation and approval of cancer drugs is coordinated at European level, EAP is not- every country has their own version of it.
This creates considerable delays and inequity in access to therapies- something we have experienced in the past.
Why EAPs are important for us in Melanoma
What the current situation in Europe looks like
Experiences with the set-up of EAPs in different countries
10' A brief introduction to Compassionate Usage and Early Access
Bettina Ryll, MPNE
15' The Tebentafusp Early Access Program in the UK
Jo Gumbs, OcuMel UK, confirmed
15' The Dutch Drug Access Protocol, DAP
Hans Gelderblom, Leiden, confirmed
20' Discussion with
Francesco Pignatti, EMA
12.15- 13.45 Lunch
Treating Melanoma early
This session is the continuation of a (dinner) conversation that started at ESMO 2021: where are we going with Melanoma treatments? Since the approval of the first new Melanoma drug in 2011, the treatment- and the prognosis- of Melanoma has changed considerably. Today, patients with advanced Melanoma have expectations to survive and want quality, not just quantity of life. With therapies moving earlier and earlier- most recently, into Stage 2, the question of whom to treat how and for how long becomes even more pressing.
Stage 2/3 Melanoma
Minke Lucas, NKI, Amsterdam, confirmed
Minke Lucas with Gilly Spurrier and Violeta Astratinei
Survival in Melanoma has improved dramatically, BUT we still loose half of our patients
changing risk/ benefit trade-offs
Treating early. What do you mean, it's on me to decide what to do next?!
Science session: What makes a Melanoma a Melanoma? Triggers and transitions from normal melanocytes to nevus to melanoma
Maria Pajunen and Bettina Ryll
Research team leader, INSERM (French National Institutes of Health) and MELCAYA consortium member, confirmed
Director, The UCD Charles Institute of Dermatology, Dublin, Ireland at University College Dublin; confirmed
15.30- 16.00 Coffee
A N1che: Early Melanoma and the iToBoS project
Ian James and Bettina Ryll
This session's focus is on Early Melanoma, Early Detection and provides an introduction to the iToBoS project. iTOBOS is an EU project funded under the previous program, Horizon2020, and MPNE is project partner. Please also note the linked Early Melanoma sessions on Friday!
15' Introduction- A patient (advocate)'s perspective on Early Melanoma
Ian James, MPNE
15' A whole body scanner for the early detection of Melanoma
Rafael Garcia, iTobos; confirmed
15' Melanoma, Art and AI - Generative Adversarial Network for Personalized Art Therapy in Melanoma Disease Management
Lennart Jütte, Hannover Centre for Optical Technologies, iToBoS; confirmed
HANDS-ON session: How to read a scientific paper
Bettina Ryll, Marianne Bosman and Denise Serré
In MPNE and all its forums, all statements to scientific findings need to be referenced to its source- is this a scientific publication? A communication? A personal opinion?
Learn how to read the publication of a clinical study- in parallel groups, we will be reading essential Melanoma studies- the classic ones, plus some of the most interesting recent publications. We use a tool that was originally developed for the ESMO MCBS to structure and analyse the results.
Material and tools provided but please bring your laptop/ tablet.
20.00 Conference Dinner
Formal dinner attire
In honour of a tradition started by Dick Plomp and in memory of our colleagues we lost
Dick and Roald initiated the tradition of formal dinner attire at the conference dinner
a few years ago. During COVID, we have lost several colleagues who have made
important contributions to the Melanoma community.
We will continue a tradition that one of them started in their memory.
Dinner speech Rob White
Sunday, 30th April
please check out before the session starts
8.30- 9.30 breakfast
10' Quality of Life, long-term side effects of new therapies and what MPNE should do about it
Gilly Spurrier and Bettina Ryll
15'+ 5' A new EORTC Melanoma QoL module
Mees Egeler, Ph.D student Psycho-Oncology at Antoni van Leeuwenhoek, NL
Speaker to be determined- cancelled
30' Panel- Life is more than survival
Fredrik Östman, Luc Vautmans, Lucy Davis and all
ADVOCACY TOOLS: from Theory of Change to Impact
We in MPNE support single individuals and will continue to do so. However, there is only so far this will go- not everyone finds us and our abilities to make a real difference are often limited. Another important part of patient advocacy is therefore to change the system to protect everyone in it- patient advocacy is a particular form of change management.
In this session, we are therefore testing how to adapt a Theory of Change tool developed by The Grassroots Collective to the different pillars of effective prevention, early detection, treatment and survivorship and see how the different initiatives we are all engaged in contribute to our overall vision of ZERO MELANOMA .
This session is part of our work for iToBoS to develop methodology how patient advocates can evaluate the impact of their work.
group work including coffee break
Many issues encountered by Melanoma patients are not specific to Melanoma. In this session, three advocates will present relevant initiatives that are loosely building on the first session on quality of life and lifel being more than survival: the importance of already capturing QoL during clinical trials, the importance of work- retention during cancer but also re-integration after cancer and the importance of bringing high quality cancer care covering the full spectrum to all patients.
Mercè Cases Escuté, Patvocates, confirmed
European Atlas on Clinical Trials in Cancer and Hematology or EuroACT is a research project initiated by WECAN and the European Hematology Community. The project aims to understand the clinical trial landscape in the European region, based on data extracted from all relevant European clinical trial registers. Data from the past five years will unveil differences where clinical trials have been run in European countries and will describe how and which patient-reported outcomes (PROs) and quality-of-life (QoL) instruments have been used in clinical trials.
15'+ 5' Cancer and work
Isabelle Lebroque, oPUCE, NL, confirmed
Unfortunately, cancer is not only a medical problem but also affects all other domains of life, including work. Isabelle founded oPUCE to facilitate work retention and return to work during and after cancer and has built an inspiring organisation.
Olga Valcina, OncoAlliance and Melanoma association, Latvia, confirmed
In March 2022, OncoAlliance organised a European meeting on Equality in Beating Cancer that ended with with the Riga Open Letter on Equality in Beating Cancer
Us in MPNE
We are working on a way to capture our advocacy activities and interests between us- so that everyone gets an idea what colleagues are working and after a weekend of lots of information, new people and new ideas- a way to find like-minded people for inspiration, someone to learn from and someone to teach for the next months. Watch the space!
Conference summary and conclusions
13:30 Lunch and departure