WG4: Patient management
Description
PDAC patient management will approach the following challenges: (i) Identification of European centers focused on individualized medicine approaches for pancreatic cancer treatment; (ii) Training workshops on personalized and targeted therapy strategies for young physicians and basic scientists. (iii) Establishing the framework for the development of evidence-based PDAC-best practice guidelines (HTA) and its translation into the healthcare systems in Europe by involving all relevant stakeholders (HIA); and (iv) Orchestrate the Action activities with European networks of rare diseases by adopting their standards in impacting society.
WG4 scientific objectives are the identification of European centres focused on individualized medicine approaches for pancreatic cancer treatment (WG4-1) and the establishment of the framework for the development of evidence-based PDAC-best practice guidelines (HTA) and their translation into the healthcare systems in Europe by involving all relevant stakeholders (HIA) (WG4-2).
| Coordinator | Angela Brand ([email protected]) |
| Co-leaders | Denis Horgan, Francisco X. Real |
| Members | Roza Adany, Mustafa Adham, Christos Agalianos, Sebastien Allais, Archana Ambily, Traian Sorin Barbu, Simone Benitz, Angela Brand, Louis Buscall, Cindy Canivet, Alfredo Carrato, Christian Cotsoglou, Hans-Peter Dauben, Adriano Decarli, Pablo Del Pino, Diann Dobson, Maria Durisova, Massimo Falconi, Mónica Ferraroni, Edoardo Forti, Adelaida García Velasco, Lufti Genc, Carmen Guillén Ponce, Iñaki Gutierrez-Ibarluzea, Ernst Hafen, Peter Hegyi, Denis Horgan, Istvan Hritz, Tone Ikdahl, Anna Jewell, Knut Jorgen Labori, Gabor Lakatos, John Lancaster, Bodo Lange, Lada Leyens, Núria Malats, Rafael Marcos Gragera, JM Mazarico, A. Maziukiene, Vicenzo Mazzaferro, Pamela Minicozzi, Esther Molina-Montes, Massimiliano Mutignani, Fiona O'Neill, Anes Pašić, Julie Perinel, Francisco X. Real, Michele Reni, Amnon Shabo, Amir Shafat, Yuval Shaked, Audrius Sileikis, Kirsten Steinhausen, Kestutis Strupas, Ali Stunt, Elia Stupka, Ralf Sudbrak, Domenica Taruscio, George Theodoropoulos, Giampaolo Tortora, Effy Vayena, Bonnie Wolff-Boenisch, Hatice Yildirim, Alessandro Zerbi. |
Research Lines
Identification of European centers focused on individualized medicine approaches for pancreatic cancer treatment.
Evidence-based PDAC-best practice guidelines (HTA) and its translation into the healthcare systems in Europe.
Activities
Two reports based on the EAPM survey "Barriers in access to Personalised Medicine" on pancreas cancer have been prepared by WG4:
Access to Personalised Medicine for PDAC-patients - by Marleen Jansen
+ Report on the application of an EU-index for barriers to PM
+ Presentation
Public-private translational health record endeavors could address challenges in the interpretation of privately generated genetic data - by Amnon Shabo (Shvo)
3rd European Alliance for Personalised Medicine (EAPM) Annual Conference. 2-3 June 2015, Brussel
The importance to develop and adequately resource a pancreatic cancer patient-centred European Translational Research Platform, to maximize the impact of new and existing activities at European and national levels was highlighted in this event through the COST Action.
+ more information: press release
+ video
"The Pancreatic Cancer White Paper"
The Pancreatic Cancer While Paper was launched by the EAMP in collaboration with EUPancreas (WG4). It is a direct appeal to policymakers, legislators, and regulators to encourage innovation, to enhance prevention, and to broaden access to treatment. It also calls on all stakeholders to work more closely together to reduce the burden of pancreatic cancer on patients and on society.
+ press release and white paper
PancreOS: an European Registry of Pancreatic cancer
PancreOS is intended to be a solid data base of pancreatic cancer, which will make available regular information on the burden and clinical management of pancreatic cancer in Europe. It is supported by several organisations, including the BM1204 COST Action EUPancreas, the European Network of cancer registries (ENCR) and Pancreatic Cancer Europe (PCE).
The pilot study in Spain was launched in September 2015.
The PancreOs kick-off meeting was held in Madrid on 17th March 2016.
A meeting at JCR (Joint Research Center from the EC) was held in Ispra (Italy) on 20 September 2016 to decide about the PancreOS variable protocol.
+ Minutes
+ Presentation 1 (Welcome)
+ Presentation 2 (PCR)
+ Presentation 3 (TTD)
+ Presentation 4 (Pilot study)
+ Presentation 5 (ENCR)
+ Presentation 6 (HPSG)
+ Presentation 7 (BACAP)
+ Presentation 8 (Other Initiatives I)
+ Presentation 9 (Other Initiatives II)
+ Presentation 10 (Round table)
+ Protocol
4rd European Alliance for Personalised Medicine (EAPM) Annual Conference "Taking stock", 5-7 April 2016, Brussel.
Members of WG4 participated in this 4th edition of the EAPM Annual Conference. A two-day series of roundtables were held to discuss about the need for rising awareness on personalized medicine integration at European and national levels.
+ info
EUPancreas in the 19TH European Health Forum Gastein (EHFG), 30 September 2016, Gastein
The EHFG provides an ideal platform for discussion where various stakeholders from the field of health policy making come together to discuss next steps for a healthier Europe.
The EUPancreas COST Action aim was to maximize through this event the impact of pancreatic cancer research via a research network supported by the Action on policy makers, regulatory bodies, national decision makers and the private sector.
Key stakeholders from administration, academia, NGOs and industry discussed how a European coordinated approach, such as the COST Action „EUPancreas", is combatting pancreatic cancer in Europe.
Experiences from the Action were described, such as those contributing to improve the management of the disease in European Reference Centers (ERCs), and several others aimed at reducing the burden of this deadly disease.
+ Donor oocyte program
+ EUPancreas Conference report
+ Complete EHFG Conference report
+ More information EHFG EUPancreas Workshop
+ EUPancreas webcast portal
Networking
BBMRI ERIC (https://www.bbmri-eric.eu/)
EAPM (https://www.euapm.eu/)
EPAAC (http://www.epaac.eu/)
European Union Committee of Experts on Rare Diseases (EUCERD)
EUROCAN: virtual platform (https://euracan.eu/)
NCI (https://www.cancer.gov/)
OECI (https://www.oeci.eu/)
RARECARENET (https://www.rarecarenet.eu/)
PANCREATIC CANCER EUROPE (http://pancreaticcancereurope.org/)
Meetings
- Madrid, November 2013
- Liege, November 2014
- Toledo, June 2015
- Cluj-Napoca, November 2015