Summary of Inspire2Live Congress on pancreatic cancer – 2014
The results on Pancreatic Cancer are so poor, therefore we (Inspire2Live Patient Advocates) want more attention for this type of cancer, which is deadly for over 95% of all patients. 3000 new patients mean nearly 3000 people are dying each year in the Netherlands. And this has to be stopped. With more and better research and treatments then we did so far we can do this. Especially when we work together as patients, clinicians and researchers.
This conference is meant to create awareness around pancreatic cancer. That’s where it starts with. We believe that through awareness we can put pancreatic cancer on the research agenda better then we did so far. And via research we can deliver better treatments. But not only this; we can also activate patients to participate in research and give them the faith that we can change this deadly disease into a chronic disease like other types of cancer already are. Maybe not for themselves but at least for other patients. In the end it’s all about a better quality of life for patients and their loved ones.
But Inspire2Live wants to act and not just talk. Therefore we have defined the topics that we will work on during the conference and with which we will start shortly after:
Awareness among patients to donate their data for (international) research.
Awareness among clinicians to inform the patients and ask for their data in every situation. Not only when they will have surgery.
Awareness among scientists to use this data and work together and share every result at any moment.
Awareness among policy makers to concentrate research in a few research centers.
Awareness among sponsors to facilitate the most deadly type of tumor.
We can improve research through centralization of the research in the Netherlands in a few dedicated centers. We can improve research as well by centralization of the data collection. Each patient has to be asked for their tissue, blood and patient information. And this all has to be made available for research in the Netherlands as well as for research internationally.
We are convinced that this is the way we can make big steps for this deadly disease. Initial steps nationwide in these directions (data collection, biobanking) have already been taken but now need the support and guidance of Patient Advocates of Inspire2Live strongly for the next step. Therefore, we decided to set up a one day conference in the Netherlands answering the question ‘What to do about the poor results for pancreatic cancer treatments in general and more particularly in the Netherlands?’ on September 16, 2014.
We all know: it starts with awareness and it ends with a better quality of life for patients and their loved ones.
We expect around 30 participants. The congress will be held at the Royal Academy of Arts and Sciences.
Registration and breakfast
Opening by the chair Casper Van Eijck
The impact of Pancreatic Cancer patients and their loved ones by Femke Welles
The unexpected burden of pancreatic cancer in the USA – Julie Fleshman
Why should doctors inform their patients and always ask for their data? – Hanneke van Laarhoven
The importance for patients to donate their data for (international) research – Peter Kapitein
Dutch Pancreatic Cancer Project: clinical data, biobanking, expert panel, trials – Marc Besselink
Awareness among policy makers to concentrate cancer research in a few research centers – Marcel Levi
International cooperation that brought us the organoids in pancreatic cancer research – Hans Clevers
State of the art research on Pancreatic Cancer by Andrew Biankin
Panel discussion with 2 moderators
Working session 1. We split in 2 groups (Each group is chaired by 2 leaders).We work out several topics during the congress in two separate groups:Group A (Chair: Chair: Jens Siveke and PA Molouk Milani)Introduction by Jens Siveke.
Strategy to centralize pancreatic cancer patients in the Netherlands
The role of the health insurance company in pancreatic cancer research and treatment
The Infrastructure conversation: The importance of collecting, analyzing and distributing data (tissue, blood, all kinds of information of all PC patients; financing) for research
Group B (Chair: Aldo Scarpa and PA Richard Derksen)
Introduction by Aldo Scarpa.
Which models should be used to investigate pancreatic cancer?
Where to focus on in treating and researching pancreatic cancer?
Making innovative clinical trials available for pancreatic cancer patients (centralization of clinical and science efforts to support this; examples: ‘window studies’, neoadjuvant) (clinical/scientific topic)
Report back by the chairs of the session. In this report back the whole group gives new questions for the second session.
Working session 2. We split again in 2 groups (The chairs stay at their groups. The participants are different than in the first session).
Report back by the chairs of the session. In this report back the whole group gives the final comments to be taken into account when writing the final Manifest.