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.
Can't wait till Brussels?
Meet other Melanoma advocates in the MPNE facebook group
Last update: 10th March 2015, BR
With a chance to live in sight but still out of sure reach, patients need early access to innovative therapies combined with systematic learning.
A critical factor in both is the understanding of which risk is acceptable and which benefits are desirable and how risks and benefits are weighed against each other. While patients carry the ultimate risk- both if therapies fail but also if they cannot access potentially life-saving therapies- risk/ benefit decisions are routinely made by non-patients.
The aim of this conference is therefore to take a closer look at risk from a Melanoma patient's perspective, in particular in the context of new therapies. Which type of risk are Melanoma patients willing to accept for which type of benefit?
As with any other stakeholder group, patient opinion cannot be expected to be a single value, but rather a continuum of opinions. In a workshop (Friday) with representatives from the EMA, we will therefore look into how this diversity of opinions can be accurately captured in Stage IV Melanoma.
We will then see how other stakeholders evaluate the risk of innovative therapies to arrive at comprehensive understanding of risks associated with innovative therapies.
While today's Melanoma patients might be willing to accept a higher risk in return for earlier and wider access to promising therapies, this will require systematic gathering of data, both to mitigate risks- early problems need to be picked up and reacted upon promptly- and for a systematic learning process towards a cure. To see whether the use of Real World Data could be a way forward, we will be having a Focus group (Friday) and a Podium Discussion (Saturday) as part of the GetReal project.
And as we are the Melanoma Patient Network Europe, there will be plenty of opportunities to meet other European Melanoma patients and advocates, to catch up in real life with friends and to make new ones!
In our interactive Friday workshops, you will learn more about Melanoma, what a good Mole check should look like and which type of psycho-social support would make all the the difference for our patients. Aim will not only be to acquire knowledge but also to summarise it in a format to share with our wider network afterwards, so you will get the opportunity to contribute to knowledge that matters for our community.
On Sunday, we will discuss what has happened since our last conference and the advocacy actions we will take forward in 2015/16.
Who should attend?
European Melanoma patients and advocates and any stakeholder with interest
in Melanoma and/ or risk/benefit assessment.
Patients advocates need to apply - accepted participants are eligible for
free registration, accommodation and travel support up to max 350 Euro.
Registration for other stakeholders will open shortly- information to come here.
A Melanoma diagnosis is a life-altering experience, especially for patients with advanced Melanoma.
For the first time ever, new therapies provide hope for patients with metastatic Melanoma.
With our most promising therapies still in development, access to them is critical:
The design of clinical trials and the speed with which new therapies are approved and then reimbursed by the national healthcare systems have become a question of life- or death- for our patients.
Applications are closed now.
We are looking forward to meeting you in Brussels!
Attendance upon application only.
Free registration, accommodation and travel support
will be provided for successful applicants.
About the conference
Being part of the solution
24th- 26th April 2015
HOTEL MARIVAUX BRUSSELS
Boulevard Adolphe Max 98
1000 Brussels - Belgium
Surviving Melanoma in Europe.
Access to prevention, early detection and effective treatment for all.
Melanoma Patient Network Europe