MPNE 2023
standing at the edge
Thursday, 27th April
arrival participants for the workshop on Friday morning.
Conference pre-program
Friday, 28th April
9.00- 12.00
Precision Medicine and DRUP- like clinical trials
Separate program and application
MPNE 2023
Official conference program v1.4
Note for Rare Melanomas
Depending on interest, we will add parallel sessions for rare (ocular, mucosal, acral, paediatric, familial, ultrarare) Melanomas! Please note that we also plan another MPNErare conference for autumn.
Friday, 28th April
13.00- 14.30
Melanoma in Children, Adolescents and Young Adults- MELCAYA
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 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 connnection to the wider European Melanoma community, so if you want to be involved, please let Violeta know!
Welcome to the session
Violeta Astratinei, AMeR- Melanoma Romania
Introduction to the MELCAYA
Susana Puig, MELCAYA project coordinator (invited)
Daniela Massi - diagnosis in CAYA and a second opinion platform WP3
Laura Sampietro-Colom- healthcare strategies and implementation WP7
14.00- 15.00
Welcome coffee and registration
15.00- 15.50
Conference opening MPNE 2023
Bettina Ryll
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
Bettina Ryll
Know your Stage!
Fredrik Östman and Ian James
16.00- 16.50 Update Stage 4 Melanoma
A large proportion of MPNE participants tend to be Melanoma patients with Stage 4 Melanoma. For this reason, we will start with an update on what is currently available as 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, invited
Workshop program- details to come and in parallel with session above
Workshop choices will become available closer to the event. Want to deepen a certain topic or speak to a group of European Melanoma patients at the same time? Please let us know
16.00- 16.50 Workshop block 1 please note this runs in parallel to the Stage 4 Melanoma session
17.00- 17.50 Workshop block 2
18.00
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.
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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.
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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!
20.00 Dinner
Saturday, 29th April
8.00- 8.45 breakfast
9.00- 9.45
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
Christian Blank, invited
Panel discussion
BR, GS, VA
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Survival in Melanoma has improved dramatically, BUT we still loose half of our patients
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Treating early. What do you mean, it's on me to decide what to do next?!
9.45- 10.30
Advanced Therapy Medicinal Products- ATMPs
Advanced Therapy Medicinal Products, ATMPs, in the form of TILs- Tumour-Infiltrating Lymphocytes and dendritic cell vaccines, have been in development for Melanoma for several years -and our community has experienced the challenges close-up.
NEJM publication of NCT02278887: Tumor-Infiltrating Lymphocyte Therapy or Ipilimumab in Advanced Melanoma
accessible NKI report in successful TILs trial
Jim Lund, ATMP2030 project lead and RISE, Sweden; invited
Speaker to be invited
Discussion
Further reading
10.30- 11.00 Coffee break
11.00- 11.45
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- a more effective integration of research into clinical care so that learnings reach patients faster, efforts to optimise early drug development and better leveraging the potential of data therefore might not seem Melanoma-specific (they are not) but directly impact our community.
Sesssion
Optimising Early Drug Development- UK initiative
Chris McCabe, Professor of Health Economics, Queen's University Belfast, Ireland
(invited)
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
The EHDEN- European Health Data and Evidence project
Nigel Hughes, EHDEN, Belgium, confirmed
Discussion
11.45- 12.30
Early Access to new therapies- Early Access/ Compassionate Use Programs
Fredrik Östman and Bettina Ryll
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.
This session will build on previous sessions and workshops MPNE has held on Early Access and will look into
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Why EAPs are important for us in Melanoma
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What the current situation in Europe looks like
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Experiences with the set-up of EAPs in different countries
Session
Introduction to the session: relevance for EAPs
Fredrik and Bettina
The Tebentafusp Early Access Program in the UK
Jo Gumbs, OcuMel UK, confirmed
Overview of Early Access programs in Europe
Christine MacCracken, Janssen (invited)
A regulatory perspective on Early Access/ Compassionate Use programs
Francesco Pignatti, EMA (invited)
The Dutch Drug Access Protocol, DAP
Hans Gelderblom, Leiden (invited)
Discussion
Further reading
Questions and answers on the compassionate use of medicines in the European Union
Harmonising patient-access programmes: the Dutch DRUG Access Protocol platform
The DRUG Access Protocol: access inequality and European harmonisation
12.45- 14.00 Lunch
14.00- 14.45
Quality of Life and long-term side effects of new therapies
Gilly and Bettina
A new EORTC Melanoma QoL module
Mees Egeler, Ph.D student Psycho-Oncology at Antoni van Leeuwenhoek, NL
Immune Safety Avatars- the imSAVAR project
Speaker to be determined
Panel
Fredrik, Luc, Lucy tbc
Further reading
Not Melanoma but read-worthy reflections on long-term toxicity
14.45- 15.30
A N1che: Early Melanoma
Ian James and Bettina Ryll
This session's focus is on Early Melanoma, both in terms of early onset, so Melanoma in children and young adults as well as early stage Melanoma. Early onset Melanoma is the focus of MELCAYA, a Horizon Europe project under the EU Cancer Mission where AMeR, our Romanian Melanoma colleagues, are project partner. 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!
Introduction
Ian James
Genetic predisposition in Melanoma and early-onset Melanoma (Melanoma in young age)
Susana Puig, MELCAYA; invited
A whole body scanner for the early detection of Melanoma
Rafael Garcia, iTobos; confirmed
Melanoma, Art and AI - Generative Adversarial Network for Personalized Art Therapy in Melanoma Disease Management
Lennart Jütte, Hannover Centre for Optical Technologies, iToBoS; confirmed
Discussion
all
15.00- 15.30 Coffee
15.30- 16.30
Science session: What makes a Melanoma a Melanoma? Triggers and transitions from normal melanocytes to nevus to melanoma
Heather Etchevers
Research team leader, INSERM (French National Institutes of Health) and MELCAYA consortium member, confirmed
Des Tobin
Director, The UCD Charles Institute of Dermatology, Dublin, Ireland at University College Dublin; confirmed
16.30- 17.45
HANDS-ON session: How to read a scientific paper
Learn how to read the publication of a clinical study
In parallel groups, we will be reading recent essential Melanoma studies. Material and tools provided but please bring your laptop/ tablet.
18.00
Advocacy Speed dating with Ian James
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 Conference Dinner
Formal dinner attire
in memory and honour of Dick Plomp
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.
Sunday, 30th April - these topics are likely to move within the day!
please check out before the session starts
8.30- 9.30 breakfast
9.30- 11.00
A European Health Data Space that works for patients
Gilly Spurrier and Bettina Ryll
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
Trust by design- technical and governance solutions to manage risks inherent to data sharing
Philippe Page, The Human Colossus Foundation, confirmed
GILLYWEED- progress report on GILLYWEED.
Gilly Spurrier
Discussion
11.00- 11.30 coffee
11.30- 12.45
Advocacy
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
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.
to be invited
12.45 Melanoma Kahoot!
Test your knowledge in our Melanoma Kahoot!
13.15 Conference summary and conclusions
Bettina Ryll
13:30 Lunch and departure