No more Melanoma deaths in Europe. Access to prevention, early detection and effective treatment for everyone.
Melanoma Patient Network Europe
Tell us about your Melanoma
clinical trial experience
If you are a Melanoma patient or carer and you live in the European Union, we want to hear from you!
GetReal is a project that aims to develop ideas for new, alternative trial designs that better incorporate patient perspectives and real-world data (how a treatment works in real life, rather than in traditional clinical trials) into drug development. To do this, we need understand the experience of patients and carers with traditional clinical trials and ask for ideas about what could make trials better in the future.
Find out more and take part in our anonymous survey
Thank you for your efforts- the survey is now closed.
Last update 30th March 2015, BR
Being part of the solution.
24th- 26th April 2015
HOTEL MARIVAUX BRUSSELS
Boulevard Adolphe Max 98
1000 Brussels - Belgium
the motivation for MPNE 2015
Bettina Ryll, MPNE founder
Progress in Melanoma has never been faster and never has there been more hope for patients with metastatic Melanoma- a disease that used to kill patients in 6-9 months after diagnosis.
Understanding of the underlying pathophysiology resulted in new therapies that are not only unprecedented for Melanoma, a cancer considered to be therapy-resistant until very recently, but even for oncology as a field.
No drug, no risk?
Within promising new drugs within sight but still in clinical development,
access to these potentially life-saving therapies becomes a critical issue for our patients- access to fair clinical trials, access to compassionate usage programs, fast regulatory approval and reimbursement.
Most discussions around access focus on the risk inherent to new therapies- risk of lacking clinical or cost-efficiency or risk of side effects. For a Stage IV Melanoma patient, no drug does not mean no risk- but certain death.
Instead of letting today's Melanoma patients die 'in safety', we are aiming for innovative solutions accurately capturing risk- patient risk but also the risk for every other stakeholder- for the benefit of the current and future patient generations.
We do not advocate for reckless trials- we advocate for clinical development at the scientific edge, with trials that respect patients' interests and that cost-effectively deliver clinically meaningful results for patients, clinicians and society. Instead of lengthy single-event authorisation with no follow-up, strategic gradual introduction with systematic learning and reporting rather serves patients' needs for early access, combined with systematic ongoing learning, both in terms of efficacy as well as of risks, and was discussed at last year's conference- 'The trials we want'.
Risk in innovation
The current situation in drug development- aptly termed Pharmageddon- with ever-decreasing return on investment for both the pharmaceutical industry and society as a whole, is disastrous for patients in diseases like Melanoma where a cure is in sight but not yet in secure enough reach.
Minor system corrections have proven unsuccessful, so a solution will require innovative approaches supported by and to the benefit of all stakeholders, coming with new risks for all parties involved.
Earlier access to innovative therapies for a wider patient population potentially a) benefits more patients,
b) exposes more patients to risks and
c) provides much faster a real-world picture of how these therapies perform than conventional randomized clinical trials- and the way we generate and report data will become crucial in this context.
We would like to understand what these risks are, possibilities how to mitigate these by e.g. Data reporting and how incentives need to align in order to produce the desired result- innovative therapies for EU Melanoma patients.
It is Melanoma Patient Network Europe's mission to not only indicate problems but to actively contribute to the solution. We are therefore delighted that- after our last conference voicing our concerns- we are now part of the Melanoma project of the GetREAL initiative to work on what has the potential to serve as a blueprint for future Melanoma trials!
Idealized clinical trial populations are of concern for Melanoma patients for 2 reasons:
1. inclusion/ exclusion criteria prevent many patients from entering clinical trials- which in the Melanoma situation often present the option to receive the most effective treatment with the highest survival chances.
2. final results cannot be easily transferred to the heterogeneous patient population of the real world.
At MPNE 2015, there will therefore be a small focus group with Melanoma patient advocates (Friday) and a podium discussion (Saturday) for all of you to voice YOUR opinion on real-world date in the clinical trial setting- as a way to gather more relevant data in a more patient-friendly way.
What does it take to have have better drugs faster
for all Melanoma patients in the EU?
Patient participation in
Melanoma clinical research- program
m-icab/ ESO conference
28th-30th March 2014, Brussels