​​With ESMO just behind us, we are seeing new developments for Advanced Cutaneous and Uveal Melanoma that we can expect to see in the form of clinical trials, research proposals and access discussions soon.
​
At MPNEhubs2024, we will look at these new developments in detail- so prepare for a technical meeting and some reading upfront. We will discuss developments in the context of the needs of our patient community, after a review and update of our patient pathways for Cutaneous and Uveal Melanoma. The aim is to formulate consensus statements on the issues that need addressing and to explore steps what to take forward as community, e.g. in the form of research projects or EU grant applications.
​
So in addition, we will also review how to identify promising research consortia, understand what makes for a successful grant application, learn to avoid tasks that don't provide value for our community and rather, look into leveraging the expertise of our network to contribute to research.
​
See you in Berlin!
Bettina
​​​​​​
navigation shorts
​​​​
program
version 2.0 final
​
​Thursday, 5th December 2024
arrival
​
Informal get-together​- location and timing to come, please make sure you are on slack!
​
​​​​​​​​​​​​​​​​
​​​​​​
Friday, 6th December 2024
DDR museum conference centrum
St. Wolfgang-Straße 2-4, 10178 Berlin
​
​
​
8.00 We leave the hotel for the meeting venue- about 35- 40 min by public transport, you will need a ticket AB
​​
Morning
Patient pathways: mapping areas of unmet need
We will review/ draft new patient pathways to identify areas that particularly affect patients, identify and classify potential interventions as a foundation for the MPNEhubs meeting.
9.00- 10.30 Welcome and review of areas of unmet need in advanced disease
​
Welcome and introduction: goals for MPNEhubs2024
Bettina Ryll
​
Patient pathways for Advanced Cutaneous and Uveal Melanoma: mapping unmet need and areas for potential interventions.
​
10.30- 11.00 Coffee break
​11.00- 12.30 Continuation patient pathways: unmet need and evaluating potential interventions- are these interventions organisational? Need to be addressed through policy? Research? Complementing the MELCAYA patient pathways
​
​​​​​​​12.30- 14.00 Lunch
​
​​​​14.00- 15.30 Options for those out off options
20' Precision Medicine: Update on the DRUP-Like Clinical Trials
Live Fagereng, Oslo University Hospital- PCM4EU, PRIME-ROSE, confirmed
​
​20' Organoids
​Christian Regenbrecht, ASC Oncology, Berlin, confirmed
​
20' Pharmacoscopy
Berend Snijder, Department for Molecular Systems Biology and Cell Biology, ETH Zürich, confirmed
​
​10' Discussion: How can we increase the access to and efficacy of precision medicine? What type of diagnostics do we need to increase therapeutic options for Melanoma patients?
​​​​​15.30- 16.00 Coffee break
​
16.00- 17.00 Microbiome
15' Update on the ONCOBIOME project
Gilly Spurrier, MPNE and ONCOBIOME SAB
​
30' Translational Microbiome research
Valerie Valeriano
Karolinska Institut, Department for Translational Microbiome research and pandemic preparedness, Sweden
​
15' Discussion - what's next in Microbiome research and where/ how should we get involved
​​​​​​
​
17.00- 18.30 NextGen ATMPs
​
We have had TILs, dendritic cell vaccines and CARTs in Melanoma for years, these are classified as 'somatic cell based therapies' ATMPs- see the EMA information here: Advanced Therapy Medicinal Products. We have seen that the development of cell therapies is not straight-forward, with countries testing various approaches. At the same time, we see our community targeted by providers of unproven cell therapies, often at considerable cost to the patient. This session will introduce some ongoing national and European ATMP initiatives as well as give an outlook on the future of a particular successful subset of ATMPs, CARTs.
15' Context and DARE-NL, a Dutch ATMP initiative
Violeta Astratinei, MPNE and Stichting Melanoom
​
The Dutch infrastructure for cancer-specific ATMP Research (DARE-NL) is a unique partnership between all academic developers of Advanced Therapy Medicinal Products (ATMPs) in the Netherlands. ATMPs are the next revolution in medicine promising a leap in survival, quality of life and cure for cancer patients. Although many novel ATMPs are under development in academic centers, the steps toward market approval and clinical application are complex and do not fit the traditional frameworks. The overarching goal of DARE-NL is to accelerate clinical testing of novel ATMPs for cancer patients to ensure timely and sustainable access to potentially curative treatment options for cancer patients. To reach this goal, DARE-NL was funded by the Dutch Cancer Society (KWF) to establish a national infrastructure and connect all relevant stakeholders (e.g. scientists, clinicians, pharmacists, regulatory agencies, patient advocates) in the ATMP development cycle.
​
15' TRANSFORM- European Alliance on Transformative Therapies
Stefania Alessi, policy officer, EUCOPE confirmed
​
​​​30' Advanced molecular engineering to overcome CART toxicity
CARTs are now finally moving into solid tumours and are promising new therapies but can cause severe and life-threatening side effects. Find out how control theory and molecular engineering can make the next generation of ATMPs smarter and safer.
Mustafa Khammash, Control Theory and Systems Biology in the Department of Biosystems Science and Engineering (D-BSSE), ETH Zürich confirmed
​
30' Discussion- where and how should we get involved, which policy initiatives are relevant? What type of research do we expect to see?
​​
​
18.30 Light dinner (at venue)
​​​​​​​​​​​​​​
​
​​​​Saturday, 7th December 2024
We will leave the hotel at 8.30, it is a 20 min walk or 2 stops by public transport (Birkenstrasse to Amrumer Strasse), you will need a short trip/ Kurzstrecke ticket.
9.00- 10.30 The other 50%: improving survival in advanced cutaneous Melanoma
The latest 10 yr Checkmate 067 update showed sustained long-term OS in advanced Melanoma. However, we still lose half of our patients- this session will focus on strategies on how to further increase overall survival in this setting, a) looking at factors undermining treatment success with a specific focus on toxicity management and b) tailoring treatment strategies based on patient characteristics.
​
10' Review of the patient pathway for advanced cutaneous Melanoma
Bettina Ryll
​
30' Melanoma therapies in review
James Larkin, Royal Marsden, UK confirmed
​
Minke Lucas, NKI, Netherlands declined
​
Discussion
Immune therapies in development
Therapy sequencing
From cold to hot- increasing response to immune therapies
Subcutaneous IO- what do we expect to see?
Oncolytic viruses, once more
​​​​
​10.30- 11.00 Coffee break
​
11.00- 12.30 Uveal Melanoma
Two therapies have now been approved for Metastatic Uveal Melanoma. While this is finally progress, efficacy and access remain an issue. This session will review recent findings and debate what's next.
​
10' Review of the patient pathway for advanced Uveal Melanoma
Jo Gumbs, Ocular Melanoma UK and MPNE
​​​30' Neo-antigens in uveal Melanoma
Marc- Henri Stern, Institut Curie, Paris​, France confirmed ​​
​
Overall survival benefit of immune therapies in Metastatic Uveal Melanoma
Sebastian Ochsenreither, Charité Berlin, declined
​
10' Beyond UMCURE- New EU initiatives for Uveal Melanoma
Andre Valente, Champalimaud Foundation, Lisbon, Portugal
Discussion
​
Read
​
​
12.30- 14.00 Lunch
​
​14.00- 15.30 Basic research in Melanoma- how do we get most meaningfully involved
Further improvements in outcomes in Melanoma will also require more basic research to better understand the disease. MPNE is increasingly approached for participation in basic research projects, this session will look at a concrete example and we will discuss what mutually meaningful participation could look like.
​
20' Why and how patient advocates should get involved in basic research
Bettina Ryll, MPNE
​
30' RNA-binding proteins in melanoma progression: why should we care
Fatima Gebauer, Fundació Centre de Regulació Genòmica (CRG), Spain
​
Discussion
​
​​​​15.30- 16.00 Coffee break
​
16.00- 17.00 Participation in EU projects
​
Opportunities for participation in European and national research projects are increasing. However, getting started isn't straight-forward, grant writing usually happens under time pressure and as patient organisations still tend to get contacted late in the process, that applies even more to us. Understanding the process and being aware of building blocks can however make all the difference- and is the focus of this session.
​
Understand how to find funding opportunities, what makes successful consortia, what a good grant application looks like and what to expect in terms of administration. What is an impact section, how does one incorporate Social Sciences and make sure that our participation results in differences for our patient communities and is not just yet another toothless tickbox exercise.
What does an effective patient engagement plan look like, how do you negotiate effective participation in a research project and how do you then assess the impact of your work?
​
European projects and initiatives
Bettina Ryll and Gilly Spurrier
A brief introduction to European grant opportunities, report on MPNE submissions in 2024.
EU projects of interest to follow
​
Further links
Where do I find European grants? Here
Who can provide me with regular updates about funding opportunities? Your national contact point that you can find here
​
MPNE tools and resources at your disposal
We will present some of the MPNE tools and resources that you have at your disposal to get more out of your participation in research projects.
​​How to write a patient engagement strategy
While many research funders now request the engagements of patients in research projects, engagement is often haphazard, lacks strategy and is of limited value to our community. In our experience, this is usually caused by lack of experience rather than ill- intent and consortia are grateful for a good strategy- so how does one write a meaningful, feasible and exciting patient engagement strategy?
Builds on experiences from PCM4EU, iToBoS and MELCAYA
Patient Information Material: V2A2
The production of patient information material is often claimed to be patient engagement. While transparency and accountability towards society are important parts of any research project, this activity has 3 serious limitations for us as patient advocates
1. reporting always comes after the fact, so patient information material does nothing to improve the quality of the research project itself or to drive faster implementation of research findings
2. really good patient information material that actually increases patient agency is hard to produce; for this reason we developed V2A2 as a tool.
3. scale: producing and maintaining good information material is time-consuming and there are very few of us while there are many more researchers
​
From a patient advocacy perspective, it is therefore better strategy to rather train researchers in how to produce good patient information material with help of V2A2 and to focus our own activities on research design and implementation.
Builds on Share4Rare
​
Self-ethnography
Violeta Astratinei
As part of MELCAYA, we are currently preparing a research project on the Sensemaker (R) platform that uses crowd-based observations to generate insights from the patient-perspective.
​
Impact Assessment
Gilly Spurrier
How do we know whether our participation in a project has had any impact? We are now developing a workbook for impact assessments for iToBoS that allows you to continuously reflect and evaluate the impact of your actions and to correct cause if necessary. Most importantly, it also helps to watch out for those unexpected but valuable opportunities that tend to show up.
​
​
17.00- 18.00 Discussion: participation in EU projects
How do we increase meaningful participation in research projects
​
​
​Material
​
Horizon Europe Program Guide - section on citizen engagement p54
​
​
19:00 Dinner at MOA Hotel ​​​​​​
Sunday, 8th December 2024​
We will leave the hotel at 8.30, it is a 20 min walk or 2 stops by public transport (Birkenstrasse to Amrumer Strasse), you will need a short trip/ Kurzstrecke ticket.
​
​Bringing it all together- after having started with areas of unmet need, reviewing potentially promising avenues, time to tie it back! Where do we see research need and what type of opportunities would be needed to address them? Which type of issues do we anticipate, in particular with regards to access?
​
9.00- 9.45 Guidelines failing patients 'at the edge'
Guidelines are an important tool to make sure patients are treated evidence-based and equitably. However, we see that guidelines consistently fail patients 'at the edge'- those failed by the available standard of care who rely on access to the latest scientific and medical knowledge and on access to experimental medicine, including clinical trials. This particularly affects patients with rare Melanomas as evidence-generation takes longer and clinical evidence is less evident to interpret. Also, guidelines take years to produce and publish- by which time they are already outdated.
Discussion
How can we as community ensure that guidelines and consensus documents concerning Melanoma are up-to-date, regularly updated and that in the absence of conclusive evidence where value judgements play a more important role, the patient community is part of the decision-making process?
​
9.45- 10.30 Policy and initiative update
Gilly Spurrier, ECO PAC vice-chair
Lidia Zielinska, CDDF scientific committee
Bettina Ryll, WHO Europe Novel Medicines Platform
​​​10.30- 11.00 Coffee break​
11.00- 12.30 Consensus Advanced Melanoma ​
Formulating a series of consensus statements of the Unmet Need in Advanced Melanoma. Building on patient pathways and consensus statements, we will work on a theory of change for advanced Melanoma with a particular focus on a) research needs b) enabling conditions and c) opportunities for our community.
​
12.30- 13.00 Conclusions and next steps​​
Light lunch and departure ​​​​​​​​​​​​​
Looking forward to seeing you in Berlin!
​​Bettina, Gilly, Fredrik and Violeta
MPNE core
Event made possible through the support of
logos pending
ASC Oncology
Participation
WHO SHOULD APPLY?
This meeting is for European Melanoma patient advocates with a particular interest in Advanced Melanoma.
The level of the meeting will be high and a sufficient level of English is required to follow.
HOW DO WE SELECT?
As always, participation is upon application only. First and foremost, we select based on motivation and the potential impact for Melanoma patients.
​
​
WHAT DOES IT COST?
Accepted participants will receive free registration and full-board accommodation for the 3 nights (Thurs, Fri, Sat) of the meeting. Extra nights are at participants' own expenses and need to be arranged by the participants themselves.
​
​
COVID PROVISIONS
Venues are expected to comply with local COVID measures and so will the event. Please be aware that these differ from country to country. We expect participants to comply by local rules and ensure they are sufficiently vaccinated. In line with general rules, there will be no mask mandate anymore. Participation in the event is at the participant's own risk.
​
​Travel needs to be arranged for by participants themselves but will be reimbursed up to the maximum amount of 400€ for economy/ 2nd class travel after full attendance of the conference. Please look for the best deals and keep the original receipts of your bookings. Berlin airport is very well-connected by train, and we will be travelling by public transport. Please make sure you have a valid ticket at all times, easiest via the BVG app or bought at local ticket machines. To keep reimbursmennt manageable, we will reimburse all travel within Berlin with a flat-fee of 25 EUR.
Cannot afford to pay ticket upfront? Please contact us.
No attendance, no receipt = no reimbursement.
Logistics
Accommodation
Stephanstrasse 41, 10559 Berlin, Germany
​
U-Bahn stop: Birkenstrasse (U9, the orange line)
Meeting venue Friday
DDR museum conference Centrum
St. Wolfgang-Straße 2-4, 10178 Berlin, Germany
​
Public transport:
S- und U-Bahnhof Alexanderplatz
S-Bahnhof Hackescher Markt
U-Bahn U5 Museumsinsel, Rotes Rathaus
Bus 100 und 200: Haltestelle Spandauer Straße
Bus 300: Haltestelle Lustgarten
Tram: M4, M5, M6: Haltestelle Spandauer Straße
​
​
Meeting venue Saturday and Sunday
Charité Campus Virchow- Klinikum
Forum 4
Auditorium 4- Hörsaal 4 (Pathology CVK)
Augustenburger Platz1
13353 Berlin ​​​​​
​
U-Bahn stop: Amrumer Strasse (U9)
​
​
Getting Around
We will be travelling by public transport, please make sure you have a valid ticket at all times. Download the BVG app in English here.
​
Arrival
​
Airport Berlin Schönefeld
Requires a ticket ABC (4.40 EUR)
​
Several options, e.g.
Take the train to ZOOLOGISCHER GARTEN
Take the U9/orange line/ direction Osloer Strasse for 3 stops till BIRKENSTRASSE.
​
​​Train
​
Berlin Hauptbahnhof (Central Station)
Requires a ticket AB
​
​
​
​
Location
Berlin, exact location as per program
attendance
Follow