MPNE 2015 conference program

MPNE 2015 The risk of NOT taking risks in Melanoma

MPNE 2015 24th-­‐ 26th April, Brussels

MPNE 2015

24th- 26th April 2015 Hotel Marivaux Boulevard Adolphe Max 98 1000 Brussels Belgium http://www.hotelmarivaux.com

Organizer MPNEsupport for Melanoma Patient Network Europe Bettina Ryll Kristin Bryon Org. 802492-1069 Fjällbo Selknä 152, 75597 Uppsala, Sweden

Emergency contacts Kristin +46730370724 Bettina +46722297272 Gilly +33676318349

MPNE 2015 24th-­‐ 26th April, Brussels

Welcome to MPNE 2015 We are happy to welcome you to this year’s conference of the Melanoma Patient Network Europe ‘The risk of

NOT taking risks in Melanoma’.

It is only recently that new therapies provide, for the first time ever, hope in Melanoma and we will rely on successful innovation to find a cure.

Innovation always comes with risks. Melanoma has now not only dramatically changed our lives but also our willingness to accept risks BUT HOW MUCH? for substantial benefit.

While patients carry the ultimate risk- both if therapies fail but also if they cannot access potentially life-saving therapies- risk/ benefit decisions are HOW CAN WE routinely made by non-patients.

CHANGE THAT? This conference’s ambition is, therefore, to look at the different perspectives of risk, where it occurs when new therapies are developed and how we can first measure and then protect from it.

So we are looking forward to your active participation in the discussion!

And please make full use of the opportunity to meet advocates and other stakeholders to exchange and refine your ideas.

The MPNE organizing team Kristin, Gilly, Violeta and Bettina

MPNE 2015 24th-­‐ 26th April, Brussels

MPNE 2015 24th- 26th April 2015

FRIDAY- 24TH APRIL morning- arrival of conference participants

WORKSHOPS Workshops take part in two blocks of parallel sessions. You have received an email with your workshops, there are also name lists available. Rooms will be clearly indicated.

13.30- 15.15 - Block 1 Workshop I- Dermoscopy- Part I What does a good skin exam look like?

Zrinjka Pastar, Ana-Maria Forsea, Monika Gniadecka, Selma Ataly Room: TATI 2 Workshop II- Therapy options in Stage IV Melanoma.

Pascal Wolter, University Hospital Leuven, Belgium Room: Forman Workshop III- Psychosocial support in Melanoma.

Stefania Bassino, University of Turin, Italy Room: Polanski GetReal- Focus group for the GetReal working group Room: Tati 1

15.15- 15.45 Coffee

MPNE 2015 24th-­‐ 26th April, Brussels

15.45- 17.30 – Block 2 Workshop IV- Dermoscopy- Part II Develop a MPNE recommendation: The good skin exam.

Zrinjka Pastar, Ana-Maria Forsea, Monika Gniadecka, Selma Ataly Room: Tati 2 Workshop V- Therapy options for Stage III Melanoma.

Dirk Schadendorf, University Hospital Essen, Germany Room: Polanski EMA Focus group with Stage IV patients and carers Room: Forman

18.00- 19.00 Mix & Match Get to meet old friends and new faces!

Gilliosa Spurrier, Mélanome France

19.30 Welcome Dinner- Marivaux Hotel

For advocates Share your ideas and vote for the best advocacy poster!

Distribute the 5 voting points you received at registration and the poster with most points wins the MPNE 2015 poster prize!

MPNE 2015 24th-­‐ 26th April, Brussels

SATURDAY- 25TH APRIL MPNE ADVISORY BOARD

‘THE RISK OF NOT TAKING RISKS IN MELANOMA’ from 8.15 Coffee 8. 45- 9.00 Welcome 9-00- 10.30

Session 1- Risk 1.1 How much evidence and how much risk?

Introduction to the conference Bettina Ryll, MPNE 1.2 The risk in Melanoma Stage IV Lori Murdock, Melanoma Network UK and Stage IV Melanoma patient, UK 1.3 New hopes and new risks- the oncologist’s perspective on innovative medicines in Melanoma.

Bart Neyns, University Hospital Brussels, Belgium 1.4 Who should decide which risk to take?

Pan Pantziarka, The George Pantziarka TP53 Trust, UK 10.30- 11.00 Coffee 11.00- 12.30

Session 2- No risk, no innovation 2.1 Innovative medicines and risk.

Michel Goldman, Free University Brussels, previous IMI director, Belgium 2.2 Risk / benefit assessment- the regulatory perspective.

Jorge Camarero, Spanish Agency of Medicines and Medical Devices, Spain 2.3 Innovation and risk- the industry perspective.

Brendan Barnes, EFPIA, Belgium

MPNE 2015 24th-­‐ 26th April, Brussels

2.4 BIG data and innovation.

Nathalie Kayadjanian, Science Europe, Belgium 12.30- 14.00 Lunch buffet 14.00- 15.30

Session 3- Measuring and mitigating risks.

3.1 The earlier, the better- learning in Early Access Programs Edna Venneker, mytomorrows, Netherlands 3.2 Concerns about risk when procedures accelerate- parallel scientific advice in Australia Andrew Bruce, Amgen, previously: Medicines Australia, Switzerland 3.3 Risk- is it a matter of time?

Geert Bakker, Inspire2live, Netherlands 3.4 Incorporating patient risk/benefit assessment into regulatory decisions Francesco Pignatti, EMA, UK 15.30- 16.15 Coffee break 16.15- 16.45

Session 4- GetReal Introduction to the The GetReal initiative, results of the survey and the focus group Sarah Garner, NICE/CASMI, UK 16.45- 17.45

Podium discussion- GetReal!

Real-world data in clinical trials

18.30 Poster competition and reception 19.30 Conference Dinner and poster price Dinner speech: Bob Phillip, Mesa Consultants Ltd, UK

MPNE 2015 24th-­‐ 26th April, Brussels

This year’s poster prize By one of usa painting by Lori Murdock!

Lori Murdock about her painting Slide III 2015 Acrylic ink on fabric ‘Although I studied Fine Art at university in my younger days it was only when I retired on the grounds of ill health with my worsening melanoma prognosis that I began painting. My abstract paintings are all vibrant, rich and colourful yet all my personal imagery stems from my diagnosis of melanoma. I like to think this reflects my positive attitude to life, how I manage my condition and my life long love of colour. I favour acrylic ink for the intensity of colour and the way I can manipulate it on application dependant of whether the fabric is wet or dry. My iconography developed from viewing ct scan images, discussions with my oncologist and enduring surgical procedures which always makes my mind go into overdrive.

This painting developed from a ct assisted biopsy that I had to comply with the eligibility criteria to enter a trail which I then failed to participate in as I was not allocated to the antipd1 drug arm, as documented in the film by Alexandra Sorgenicht, ‘Patient on trial-what trial participation really is like’. I translated the experience of my biopsy into the slide examples that I remember using as a child during science lessons. Flat, dissected, a cross section of biological material pinned down and enlarged here under glass for further analysis.’

MPNE 2015 24th-­‐ 26th April, Brussels

SUNDAY- 26TH APRIL Please check out after breakfast.

ADVOCACY DAY Focus on MPNE advocacy activities: • • •

MPNE 2014 in review Presentation of Friday’s MPNE core meeting results: actions planned for 2015/ 2016 short reports from Friday’s workshops

8.30- 10.30

The MPNE network- where do we stand?

Welcome back and MPNE in 2014 15' Bettina Ryll, MPNE Summary of the Friday workshops 15' Gilly Spurrier, Mélanome France, France Focus on Romania- one year later 10' Ana- Maria Forsea, Romanian Skin Cancer Foundation, Romania The network driving research- The Melanoma susceptibility project 15' Antonella Romanini, ACM, Italy The EUPATI- experience 10' Violeta Astratinei, Melanom Romania, Netherlands/ Romania Learning by example: Overcoming cancer drugs shortages - the role of volunteer networks and the media 20' Vlad Voiculescu, The Missing Cancer Drugs Initiative, Austria

MPNE 2015 24th-­‐ 26th April, Brussels

10.30- 11.00 Coffee break 11.00- 12.45

MPNE strategic planning Introduction- 5' PLENARY- MPNE STRATEGY How to find THAT clinical trial 10' Bettina Ryll, MPNE How to make the MPNE network work- our communication strategy. 10' Lori Murdock, Melanoma Network UK, UK Knowledge is power- our education strategy.

10' Gilly Spurrier, Mélanome France, France 12.45- 13.00

Summary of the meeting and closure Bettina Ryll, MPNE 13.00- 14.00 Buffet lunch and departure

Safe travel home TRAVEL REIMBURSEMENT Please do not forget to submit your original travel receipts with the completed and signed reimbursement form you have received by posteither directly at the conference or by Post (NOT registered mail) to Kristin until 31st May 2015.

MPNE 2015 24th-­‐ 26th April, Brussels

Our Faculty Zrinjka Pastar, University of Zagreb, Croatia Ana-Maria Forsea, Romanian Skin Cancer Foundation, Romania Monika Gniadecka, Herlev Clinic, Denmark Selma Ataly, ZBC Multicare, Netherlands Pascal Wolter, University Hospital Leuven, Belgium Stefania Bassino, University of Turin, Italy Dirk Schadendorf, University Hospital Essen, Germany Gilliosa Spurrier, Mélanome France Lori Murdock, Melanoma Network UK, UK Bart Neyns, University Hospital Brussels, Belgium Pan Pantziarka, The George Pantziarka TP53 Trust, UK Michel Goldman, Free University Brussels, previous IMI director, Belgium Jorge Camarero, Spanish Agency of Medicines and Medical Devices, Spain Brendan Barnes, EFPIA, Belgium Nathalie Kayadjanian, Science Europe, Belgium Edna Venneker, mytomorrows, Netherlands Andrew Bruce, Amgen, previously: Medicines Australia, Switzerland Geert Bakker, Inspire2live, Netherlands Francesco Pignatti, EMA, UK Sarah Garner, NICE, UK Bob Phillips, Mesa Consultants Ltd, UK Antonella Romanini, ACM, Italy Violeta Astratinei, Melanom Romania, Netherlands/ Romania Vlad Voiculescu, The Missing Cancer Drugs Initiative, Austria

We thank our speakers for their time and engagement MPNE 2015 24th-­‐ 26th April, Brussels

Thank you for your participationwe are looking forward to your feed-back and hope to see you again soon! www.melanomapatientnetworkEU.org

This event was made possible through the support of-

MPNE 2015 24th-­‐ 26th April, Brussels