Letter from the Chairman (Dermot O Toole)

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Millicent Stephens
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1 Letter from the Chairman (Dermot O Toole) Dear Friends and Colleagues, Prof. Dermot O Toole, ENETS Chairman It is a great honour to have tak en over the role as Chairman of ENETS at our last annual meeting marking the 15th year of ENETS existence. Firstly, I would reiterate our debt of gratitude to the immediate past Chairman Massimo Falconi who skillfully managed to achieve several important changes helping to progress the Society in a very positive manner. I also pay tribute to the exceptional dedication and drive of our Executive Committee and Advisory Board members as well as to all the staff at ENETS office (working hard throughout the year and in preparing for the annual meetings) and all of our dear members. This newsletter highlights the past year including the 15th Annual ENETS Conference and gives a glimpse of some of the new areas and projects that ENETS plans in the near future. My ambition is to continue steering the ENETS ship embracing educational and scientific endeavours into the 3rd decade of the 21st century. We in ENETS will endeavour to expand the portfolio of NET-related cancer research, diagnosis, treatment, care and advocacy. The overarching aspect to ENETS-driven care has been based on multi- disciplinarity and this aspect has to remain the focus to our edu cational programme, development of scientific endeavours and creating improved networking channels with international patients groups and other national NET Societies. Yours sincerely, Dermot O Toole In this Newsletter Letter from the Chairman (Dermot O Toole) ENETS Centers of Excellence ENETS goes beyond Europe ENETS REGISTRY making strong progress ENETS ERN Collaborations Highlights of the 15th Annual ENETS Conference Scientific Programme ENETS 8th Postgraduate Course 2018 The Life Achievement Award 2018: Gianfranco Delle Fave ENETS Grant and Award Recipients 2018 MYENETS ENETS updates Education E-Learning: PG Course Webinar and NET CME Courses Excellence Academy Fellowship Programme ENETS Membership Executive Committee and Advisory Board ENETS Executive Committee ENETS Advisory Board 2018 ENETS Advertisement

ENETS Centers of Excellence ENETS goes beyond Europe to welcome Australia (Melbourne) as CoE The ENETS Centers of Excellence Programme generated extensive and largely growing international interest

Highlights of the 15th Annual ENETS Conference, March 7 9, Barcelona, Spain Scientific Programme The conference attracted 1,503 participants from 66 countries, includ - ing for the first time Ghana,

The international faculty proposed a well-received scientific programme which included a nurse s programme and a joint symposium with patient advocates.

2 ENETS Centers of Excellence ENETS goes beyond Europe to welcome Australia (Melbourne) as CoE The ENETS Centers of Excellence Programme generated extensive and largely growing international interest over the years. In total, 45 CoEs have been accredited within Europe (newcomers in 2018 are NET BO- LOGNA Multidisciplinary Team and NET CENTER HAMBURG) since the programme was launched in Highlights of the 15th Annual ENETS Conference, March 7 9, Barcelona, Spain Scientific Programme The conference attracted 1,503 participants from 66 countries, includ - ing for the first time Ghana, Uzbekistan, and the Republic of Georgia. ENETS is proud to have welcomed more than 70 new members, who joined the Society during the conference. The international faculty proposed a well-received scientific programme which included a nurse s programme and a joint symposium with patient advocates. In 2017 a pilot project was commenced in Australia and ENETS is proud to welcome the NET Center at Peter MacCallum Cancer Center (PMCC) in Melbourne as the first ENETS Center of Excellence beyond Europe after their successful certification audit which was conducted on 26 April In 2018 ENETS received CoE applications from all over Europe, the USA and Near East. Due to growing international outreach ENETS has linked with an international operating Certification Company DQS which commenced its service in May Plenary room This year's participants appreciated more opportunities to interact with speakers and their presentations, namely through real-time polls during the presentations as well as the poster walks in smaller groups. ENETS REGISTRY making strong progress The ambitious ENETS-NET Registry project has seen enormous progress as the Registry was successful in compiling data from 7 European countries in an anonymous scientific database. Descriptive data of more than 10,000 patients, represents the biggest dataset after the SEER have been evaluated. The results have been presented at the 15th Annual ENETS Conference in March and ASCO Meeting in June The Registry Team is confident in making further progress by contracting more countries regarding data transfer and answering specific questions by way of data queries in the near future. The Executive Committee extends a large debt of gratitude to Drs. Ivan Borbath and Chris Verslype and the entire Registry Team for their ongoing efforts that are now paying dividends; mapping epidemiological data across Europe will provide essential information on NET patients demographics and outcomes. ENETS ERN Collaborations ENETS Audit team left to right Dr. D. Baretton, Prof. E. Krenning, Dr. R. Reinstorf and Prof. R. Hicks, Head of NET Centre at Peter MacCallum Cancer Centre Feedback was overwhelmingly positive. In addition to the programme focussing on NET, participants welcomed other cancer-related topics such as talks on the role of the human microbiome in the initiation, progression and treatment of cancer and approaches to the topic of immune modulating therapy. Webcasts of all talks are available on ENETS website MYENETS. Poster Walk moderated by Dr. C. Toumpanakis ENETS 8th Postgraduate Course 2018 The 8th Annual ENETS Postgraduate Course (PG) highlighting the advances in GEP and bronchial NET management attracted a record breaking number of 700 delegates and received positive feedback scores. The courses are available as webcasts for postgraduate course participants and ENETS members via MYENETS. ENETS is maintaining its collaborative relationship with the European Reference Network for Rare adult solid Cancer ERN-EURACAN. ENETS will further strive to be a forerunner in many NET-related aspects leading with its ERN partner within the European community. We are currently focussing on promoting and broadening neuroendocrine-related education together with ENETS past Chairman Martyn Caplin, who links ENETS to ERN. 2 ENETS Newsletter

Massimo Falconi, ITA (center), Gianfranco Delle Fave, ITA (2nd from right) and Bertram Wiedenmann, GER (right) Annunciata Di Domenico, SUI and Massimo Falconi, ITA Ivan Borbath, BEL and Massimo

Gianfranco Delle Fave is Professor of Gastroenterology at Sapienza University of Rome, Italy.

Gianfranco Delle Fave was a founding member of ENETS in 2004.

3 Massimo Falconi, ITA (center), Gianfranco Delle Fave, ITA (2nd from right) and Bertram Wiedenmann, GER (right) Annunciata Di Domenico, SUI and Massimo Falconi, ITA Ivan Borbath, BEL and Massimo Falconi, ITA The Life Achievement Award 2018 The Life Achievement Award was presented to Prof. Gianfranco Delle Fave by Prof. Massimo Falconi and Prof. Bertram Wiedenmann. Gianfranco Delle Fave is Professor of Gastroenterology at Sapienza University of Rome, Italy. During his career he made several advances in clinical and academic areas pertaining to neuroendocrine tumors and facilitating the careers of NET researchers in Rome and beyond. Gianfranco Delle Fave was a founding member of ENETS in His clinical expertise and leadership skills have been linked to many medical societies including the Italian Association of Neuroendocrine Tumors (ITANET) and ENETS. We should not, however, ignore his international status as a leading academic gastroenterologist. ENETS Grant and Award Recipients 2018 The following grants have been awarded within the framework of the 15th Annual ENETS Conference 2018: Jorge Barriuso (GBR), ENETS CoE Excellence Academy Fellowship Recipient 2017 "Validation of Novel Biomarker Candidates for Everolimus in PanNETs" Christodoulos Pipinikas (GBR), ENETS CoE Excellence Academy Fellowship Recipient 2017 Deciphering the Genomic, Epigenomic and Transcriptomic Landscape of Bronchial Neuroendocrine Tumour Development and Progression Melissa Frizziero (GBR), ENETS CoE Young Investigator Grant Recipient 2018 Development of an Alternative Precision Medicine Platform for Identifying and Testing Novel Therapeutic Strategies for Advanced Extra-Pulmonary (EP), Poorly Differentiated (PD), Neuroendocrine Carcinoma (NEC). The following awards have been given within the framework of the 15th Annual ENETS Conference 2018: Vincenzo Corbo (ITA), ENETS Håkan Ahlman Award Recipient 2018 Whole-Genome Landscape of Pancreatic Neuroendocrine Tumours Basic Science Category Annunciata Di Domenico (SUI), 1st Place Best Oral Abstract Epigenetic Changes in DAXX and/or ATRX Negative Pancreatic Neuroendocrine Tumors Jaume Capdevila (ESP), 2nd Place Best Oral Abstract BRAF-V600E Driven Mutations in Grade 3 Neuroendocrine Carcinomas of Colon Origin: Results from Genomic/Epigenomic Profilings and Patient- Derived Mouse Model Jerome Cros (FRA), 1st Place Best Poster Genomic and Transcriptomic Characterization of Aggressive Well Differentiated Pancreatic Neuroendocrine Tumors (WD PanNET) Teresa Sposito (GBR), 2nd Place Best Poster Histone Replacement in Cancer: Dissecting the Role of H3.3 Chaperones in Pancreatic Tumorigenesis Anela Blazevic (NED), 3rd Place Best Poster The Effect of Temozolomide on Pancreatic Neuroendocrine Tumors in Vitro and Role of MGMT and MMR System in Temozolomide Resistance Clinical Science Category Ivan Borbath (BEL), 1st Prize Best Oral Abstract The ENETS Registry: First Results of a Collaborative Effort Including over Patients with Neuroendocrine Neoplasms (NENs) from 7 European Countries Atsuko Kasajima (GER), 2nd Prize Best Oral Abstract PD-L1 Expression and Its Clinical Relevance in Neuroendocrine Tumors of the Lung Jennifer Chan (USA), 1st Prize Best Poster Phase II Trial of Cabozantinib in Patients with Carcinoid and Pancreatic Neuroendocrine Tumors Faidon Laskaratos (GBR), 2nd Prize Best Poster Antiproliferative Effect of Above-Label Doses of Somatostatin Analogues (SSA) for the Management of Neuroendocrine Tumors (NETs) Nicole Brighi (ITA), 3rd Prize Best Poster Morphological Factors Related to Nodal Metastases in Neuroendocrine Neoplasms of the Appendix. A Multicenter Retrospective Study ENETS Newsletter 3

4 ENETS Updates Education ENETS strives to further strengthen its Educational Programme offering more UEMS-certified e-learning courses and preceptorship courses as well as a NET expert curriculum in the near future. E-Learning: Postgraduate Course Webinar and NET CME Courses Educational updates are easily accessible on the ENETS website and participants can simply log-in and earn CME credits for three accredited webinars. The NET CME courses on ENETS Guidelines include two webinars: Management of jejuno-ileal and appendiceal neuroendocrine neoplasms (NENs) Metastases from NENs and management of gastroduodenal and colorectal neuroendocrine neoplasms The Postgraduate Course Webinar began as a pilot project in ENETS is currently in the process of gaining UEMS Accreditation for the PG courses held during 15th Annual ENETS Conference as well as updating the CME course for ENETS guidelines for the Management of Pancreatic Neuroendocrine Neoplasms for re-accreditation. Excellence Academy Fellowship Programme The ENETS Excellence Academy Fellowship Programme (EEAFP) has been set up to enable and foster current and future projects form the most promising Young Investigators Rising Stars embarking on their own independent research team or programme in the field of the neuroendocrine tumor. The first ENETS CoE Excellence Academy Meeting took place on 29 November 2017, Munich, Germany. The group developed a common approach dedicated to Follow-up of Metastatic Enteropancreatic Tumors, Definition of Tailored Programs and Identification of New Prognostic and Therapeutic Biomarkers to be followed as a joint EEAFP research project for ENETS Membership ENETS membership is increasing and the Society now has more than 1,700 members. Join ENETS, become a member and profit from a strong international network with expanding benefits: Executive Committee and Advisory Board ENETS Executive Committee (EC) and Advisory Board (AB) underwent its annual rotation with elections in March The Executive Committee would like to thank both Profs. Martyn Caplin and Reza Kianmanesh for their work on the Executive Committee they have stepped aside to allow for new members to join. Prof. Martyn Caplin s commitment to ENETS and his myriad of contributions to the promotion of neuroendocrine-related issues are immeasurable and we all owe him a great debt of gratitude. ENETS Executive Committee Dermot O Toole, Ireland, Chairman Massimo Falconi, Italy, Vice-Chairman Marianne Ellen Pavel, Germany, Chair-Elect Bertram Wiedenmann, Germany, Treasurer Aurel Perren, Switzerland, Scientific Secretary Wouter W. de Herder, Netherlands, Advisory Board Chairman Anne Couvelard, France, Member Rocio Garcia-Carbonero, Spain, Member John Ramage,, Member Eva Tiensuu Janson, Sweden, Member ENETS Advisory Board 2018 Detlef Bartsch, Germany Eric Baudin, France Susane Haydee Belli, Argentina Lisa Bodei, USA Ivan Borbath, Belgium Martyn Caplin, Justo Castaño, Spain Frederico Costa, Brasil Philippa Davies, (NET Nurse Representative) Wouter W. de Herder, (AB Chairman) Gianfranco Delle Fave, Italy Clarisse Dromain, Switzerland Barbro Eriksson, Sweden Antongiulio Faggiano, Italy Jenny Falkerby, Sweden (NET Nurse Representative) Nicola Fazio, Italy Andrea Frilling, Simona Glasberg, Israel Enrique Grande, Spain Rodney Hicks, Australia Zhao Hong, China (CNETS AB Guest) Dieter Hörsch, Germany Robert Jensen, USA Andreas Kjaer, Denmark Teodora Kolarova, Bulgaria (Patient Advocacy AB Guest) Beata Kos-Kudła, Poland Anna Koumarianou, Greece Balkuni Krishna, India (APNETS - AB Guest) Matthew Kulke, USA (Registry - AB Guest) Bruno Niederle, Austria Els Nieveen van Dijkum, Kjell Öberg, Sweden Ulrich-Frank Pape, Germany Andreas Pascher, Germany Marc Peeters, Belgium Eric Raymond, Switzerland Nick Reed, Guido Rindi, Italy Anja Rinke, Germany Philippe Ruszniewski, France Aldo Scarpa, Italy Halfdan Sorbye, Norway Anders Sundin, Sweden Christos Toumpanakis, Juan Valle, Marie-Louise van Velthuysen, Chris Verslype, Belgium (Registry AB Guest) Marie-Pierre Vullierme, France Staffan Welin, Sweden James Yao, USA ENETS Newsletter 4

5 5 ENETS Newsletter

Preliminary Conference Program

Preliminary Conference Program Contents Scientific Organizing Committee... 1 ENETS Scientific Conference Program... 2 09.03.2016... 2 ENETS Postgraduate Course... 2 Welcome Reception... 3 10.03.2016...