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ESO-M-icab Conference - Patient Participation in Melanoma Clinical Research

Not eligible for ESCO credits

28.03.2014  -  30.03.2014

Brussels, Belgium

CONFERENCE

Melanoma

Description

ESO-m-icab Conference
Patient Participation in Melanoma Clinical Research
“experimenting with” as opposed to “experimenting on” patients
in honour of Patricia Garcia-Prieto


 



Chair: B. Ryll, SE


INTRODUCTION
Recent unprecedented progress in melanoma therapies can for the first time provide hope for patients in advanced stages of the disease. However, navigating a fast-evolving treatment landscape presents a real challenge, not only for patients but also for their advocates.

With novel treatments in different stages of development, the most promising agents are often only accessible in a clinical trial setting. For this reason, access to and participation in clinical studies strongly shape the reality for stage 4 and increasingly, also stage 3 melanoma patients. The current logistical, ethical and humane challenges to melanoma patients’ enrolment in clinical trials now appeal for a change of paradigm in the design and conduct of these trials.


This conference, organised jointly by m-icab and ESO, will therefore focus on patient participation in melanoma clinical research, with an update on the latest treatment developments (Session 1), how patients gain access to these (Session 2), the aspects of clinical trials that are problematic for melanoma patients (Session 3, 4) and a panel discussion involving all stakeholders on ‘the melanoma clinical trial of the future’ and on concrete steps on how patients can get involved in this process (Session 5).

In the past, m-icab has combined advisory board activites with functions of a European platform for melanoma patients. In order to stay true to our mission, to systematically address the problems faced by melanoma patients across Europe in a constructive, collaborative and result-orientated way, we need to make the step forward through a more structured organisational approach. The second day of the conference will therefore focus on the establishment of a European platform for melanoma patient advocacy (Session 6 and 7).
In addition, we will offer workshops to support capacity building in the melanoma patient advocacy community.


Suggested Reading
Patient and public involvment in clinical trials, H.Thornton BMJ (2008)
(http://www.bmj.com/content/336/7650/903)


AUDIENCE
The conference is intended for melanoma patients, their advocates and any stakeholders with interest in patient-centered clinical research.

Admitted participants will be granted accommodation for 2 nights (28 and 29 March 2014) and a contribution for travel, up to a maximum of 350 euro. Travel costs will be refunded by bank transfer after the conference and after receipt of a completed travel reimbursement form accompanied by original travel receipts.


AIM
The aims of this conference are three-fold:

  
1.
providing information about recent developments in clinical research to melanoma patients and their advocates to help them to efficiently access the best available treatments
  
2.voicing the concerns of melanoma patients with respect to the current model of drug development and initiate a constructive dialogue between the different stakeholders how these can be best addressed, the results of this discussion will be summarized in a statement paper and
  
3.providing a platform for the formation of a European network of melanoma patient advocacy groups.



ACKNOWLEDGMENT
ESO and M-icab are grateful to the following companies for supporting this conference:
Amgen, Bristol Myers Squibb, GlaxoSmithKline, Novartis Oncology and Roche

  
 

 
 
  
 
 
  
 
 
  
 
 
  
 
 

 

VIDEO
   
   Documentary of the m-icab/ ESO conference 28th-30th March 2014 in Brussels
on patient participation in clinical research. The trials we want- Melanoma
patients exploring innovative drug development concepts better suited to patients'
needs.
Click here to watch the video. 



General information

ORGANISING SECRETARIAT               
European School of Oncology (ESO)            
Via Turati, 29                   
20121 - Milan, Italy
Corinne Hall - chall@eso.net - Tel: +39 0285464522+39 0285464522


VENUE, ACCOMMODATION and SUPPORT FOR TRAVEL
The conferece will be held at the MARIVAUX Hotel, Brussels, Belgium.
To view the conference hotel website, please click here.

Admitted participants will be granted accommodation for 2 nights (28 and 29 March 2014) and a contribution for travel, up to a maximum of 350 euro. Travel costs will be refunded by bank transfer after the conference and after receipt of a completed travel reimbursement form accompanied by original travel receipts


AUDIENCE
The  conference  is intended for melanoma patients, their advocates and any stakeholders with interest in patient-centered clinical research.


OFFICIAL LANGUAGE
The conference will be held in English but unfortunately, we are unable to provide simultaneous translation.


BADGE
The badge is the only official evidence of registration and should be worn at all times during the conference. Unfortunately, loss of badge means loss of registration.


INSURANCE
The organisers bear no responsibility for untoward events in connection with, before, during and after the conference. Participants are strongly advised to take out their own personal and travel insurance coverage.


DOWNLOAD

Please, click here to download the conference poster.


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Faculty list


FACULTY
(as of 21 February 2014)

G. Bouche, Anticancer Fund, BE
R. Camp
R. Cuijpers
, mytomorrows, RO
F. De Lorenzo, ECPC, IT
A. Ferrario, LSE, GB
A. Forsea
, Romanian Skin Cancer Foundation, RO
S. Garner, CASMI, GB
L. Kirkpatrick, Ocular melanoma patient, UK
M. Longley, WIHSC and Professor of Applied Health Policy, GB
M. Militaru, ECPC, BE
J. Mossman, GB
L. Murdock
, Stage IV Melanoma patient, GB
C. Poole
, Melanoma International Foundation, USA
C. Robert, IGR, FR
B. Ryll
, M-icab co-founder, SE
D. Schadendorf, Universitätsklinikum Essen, DE
A. Testori, EORTC Melanoma Group, IT
M. Wartenberg, SPAEM, DE

Programme


PRELIMINARY PROGRAMME

28 March

  
   

Afternoon - Arrivals and registration

 15:00 
Display posters for next day’s session
 17:00m-icab informs you about the opportunity to attend a memorial ceremony at "Chapelle Royale" in honour of Patricia Garcia-Prieto, which will be organized by her family
www.melanomapatientnetworkeu.org/invitation--in-memoriam.html
 18:30
Meet in hotel for transfer to restaurant (on registration)
 19:00   
Dinner in town
First opportunity to meet

29 March

  

 08:45

Welcome: m-icab conference overview and aims

 09:00

SESSION 1 - TREATING MELANOMA IN 2014

 The latest developments in melanoma therapies
D. Schadendorf, DE
 The hope of anti-PD1
C. Robert, FR
 Treating Melanoma in Europe
A. Testori, EORTC Melanoma Group
 10:00
SESSION 2 - INNOVATION IN CLINICAL RESEARCH - HOW DO PATIENTS GAIN FASTER ACCESS TO PROMISING THERAPIES?
 A novel way to license drugs- adaptive Licensing- Title TBC
S. Garner, GB
 Early access to innovative medicines in desperate situations- adaptive licensing from the EMA perspective
F. Pignatti, EMA

 Early access to innovative medicines- adaptive licencing - the HTA perspective
TBC

 11:00Coffee Break
 11:15SESSION 3 - BARRIERS TO ACCESSING INNOVATIVE CARE TODAY
 Access to clinical trials- a clinician’s perspective
S. Algarra, ES
 Access to innovative therapies: The role of health economics
A. Ferrario, GB
 Access to innovative treatment in Eastern Europe - the need for evidence
A. Forsea, RM
 12:15Lunch Break
 13:30SESSION 4 - HOW CLINICAL TRIAL DESIGN AFFECTS A MELANOMA PATIENT’S REALITY
 Assessing quality of life- the EORTC QoL questionnaire- why does it matter?
T. Young, GB
 Access for rare Melanoma sub-types: a patient experience for ocular Melanoma.
L. Kirkpatrick, UL
 

Risk/Benefit assessment from a patient's perspective
M. Longley, GB
     

 Clinical trials - a patient’s perspective
L. Murdock, GB

 14:50 SESSION 5 - PRAGMATIC APPROACHES
 Rare diseases and innovative trial design
Speaker TBC
 Early access to innovative medicines- the example of mytomorrows
R. Cuijpers, NL
 Old drugs in a new context: Testing old drugs in new combination therapies in melanoma
G. Bouche, BE

 ‘Trials for Swedish Medicine’ - an initiative to increase the number of clinical trials in Sweden.
A. Söderhäll, SE

 15:50Coffee break
 16:15SESSION 6
 Patient involvement in clinical trial design- lessons learned from the HIV community
R. Camp
 Short summary- problematic aspects of clinical trials from the perspective of a Melanoma patient
B. Ryll, SE   
 Panel discussion: the melanoma clinical trial of the future 
Patients, participants from different pharmaceutical industries, regulatory and HTA bodies
 17:45Summary of the Day
 18:00Mix and mingle
Reception and poster Session with the opportunity to continue the discussion, for patient organisations to present themselves and to promote successful patient advocacy actions
 19:30    Dinner at the venue

30 March

  

 08:45  

Welcome back

 09:00

SESSION 7 - A EUROPEAN PLATFORM FOR MELANOMA PATIENT ADVOCACY

 Melanoma patient advocacy in Europe: a vision
B. Ryll, SE
  Reshaping EU Health Policy for Melanoma Patients’
F. De Lorenzo, IT
  Collaborating efficiently on EU level
M. Wartenberg, DE
 10:30
Coffee break
 11:00 SESSION 8 - PLENARY FOR PATIENTS AND PATIENT ADVOCATES
Chair and introduction:
J. Mossman, GB

A European Melanoma Patient Organisation- the problems we need to tackle
A.M. Forsea, RO
Presentation of results of issues perceived as pressing needs in the melanoma patient community, formation of work groups   
Work in groups to plan actions for the following year

 13:00Lunch
 14:00 Presentation of the decisions taken in the different workgroups
 15:00   
CAPACITY BUILDING FOR ADVOCATES: parallel workshop sessions
 Workshop 1
Providing reliable information on the internet
C. Poole, MIF
 Workshop 2
How to successfully lobby your politician
M. Militaru, BE

 16:45  
Summary and closing remarks
  
  
  
  
  

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