A Newsletter for Medical Professionals and ENETS Members

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Malcolm Norman
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1 A Newsletter for Medical Professionals and ENETS Members Summer 2009 The European Neuroendocrine Tumor Society (ENETS) Executive Committee: Chairman: Guido Rindi, Parma, Italy Vice-Chairman: Wouter de Herder, Rotterdam, The Netherlands Chairman Elect: Philippe Ruszniewski, Clichy, France Treasurer: Bertram Wiedenmann, Berlin, Germany Scientific Secretary: Martyn Caplin, London, United Kingdom Members: Dermot O Toole, Dublin, Ireland; Massimo Falconi, Verona, Italy Editing: Scientifi c Editor: Ulrich-Frank Pape Language Editor: Elizabeth Zach Layout and Publishing: Karger Publishing, Basel, Switzerland ENETS Coordinating Offi ce: Charité Universitätsmedizin Campus Virchow-Klinikum Department of Gastroenterology and Hepatology Augustenburger Platz 1 D Berlin, Germany Tel Fax enets.offi ce@charite.de In this issue: Record attendance at 2009 Annual Conference What s new? The ENETS Task Forces Letter from the Chairman This edition of the marks my one year as chairman of the Society and I would like to recognize and thank the many of you who have contributed to the past year s work and accomplishments. As mentioned in last winter s issue of the Newsletter, the Society has been focused on mainly two projects the establishment of the ENETS European Patient Registry and also that of Centers of Excellence. The ENETS Advisory Board reviewed these projects last fall in Mallorca and during the ENETS Annual Conference in Granada in March, information was provided to members. Please check out the back page of this Newsletter to read more about these exciting two projects and the next steps for each. Inside, you ll also fi nd an overview of the ENETS 6 th Annual Conference. I hope that you were able to attend this year. Attendance beat all previous records we were slightly over 1,100 in Granada, Spain and Guido Rindi, MD evaluations have been positive. The Granada conference exhibited nearly 120 abstracts. Work is now underway to publish those abstracts in the journal Neuroendocrinology. Please continue to visit the ENETS website for more information. And, thank you again to all abstract authors your work is an integral part of the conference s success. Conference evaluations have provided the ENETS Executive Committee with some valuable comments on how best to improve the scientifi c program for the future. I m happy to let you know that work toward that has already begun. Stay tuned for more information on the ENETS website as we develop fi rmer plans for the ENETS 2010 conference, to be held in Berlin, Germany. I look forward to seeing you there! As of today, ENETS can claim more than 600 members, which is signifi cant growth for us: at this time last year, we were at about 440 members. Please note, too, that should you be attending the ASCO meeting this year in Orlando, Florida, the Society will be represented there, 30 May to 1 June, in an effort to recruit members. Be sure to visit booth 900 at the A3 entrance. As always, I m open to any suggestions you might have for improving ENETS or suggestions for our conferences. I welcome you to contact me or the ENETS Coordinating Offi ce in Berlin. Thank you again for your support for ENETS and your interest in our work. Guido Rindi, MD, PhD, Chairman ENETS

6 th Annual ENETS Conference draws record number of participants to Granada, Spain The 6 th Annual ENETS Conference, held in early March, drew approximately 1,100 participants, the highest number of

The abstracts are slated to be published in Neuroendocrinology as a supplement this summer. and John Ramage on rectal NET.

Arnold, who worked and taught at the university hospital in Marburg and who currently lives in Munich, received the prize in recognition of his notable career in NET research and treatment.

2 6 th Annual ENETS Conference draws record number of participants to Granada, Spain The 6 th Annual ENETS Conference, held in early March, drew approximately 1,100 participants, the highest number of attendees yet for the yearly meeting. Sponsored by Novartis and Ipsen, both of which held satellite symposia during the conference, the event attracted about 120 abstracts submissions. The abstracts are slated to be published in Neuroendocrinology as a supplement this summer. and John Ramage on rectal NET. Their cases raised pointed questions and the presenters responses were well-taken. After this, the ENETS Life Achievement award was presented to Rudolf Arnold by Bertram Wiedenmann. Prof. Arnold, who worked and taught at the university hospital in Marburg and who currently lives in Munich, received the prize in recognition of his notable career in NET research and treatment. Having been taught by Werner Creutzfeldt the 2005 ENETS Life Achievement Award recipient he continued working in basic and seminal clinical research, defi ning the clinical diagnosis, clinical course and treatment modalities of NET. He particularly investigated biotherapeutic treatment strategies, heading trailblazing clinical trials, including his most recent, which is the only placebo-controlled randomized clinical trial with octreotide in midgut NET (PROMID). The morning continued with a session dedicated to poorly differentiated endocrine carcinomas, chaired by Larry Kvols and Paul Komminoth. Ola Nilsson presented an overview on diagnosis, outlining histopathological characteristics of these highly malignant neuroendocrine neo- Håkan Ahlman of Gothenborg, Sweden The complete conference program can be viewed via the ENETS website. Some highlights include: An introductory session presented ENETS Standards of Care. Chaired by Ashley Grossman and Ursula Plöckinger, the diagnosis of neuroendocrine tumors, medical therapy and surgical therapy were reviewed and the consensus of required standards for appropriate patient care were explained by presenters Barbro Eriksson, Philippe Ruszniewski and Goran Åkerström, respectively. Goran Åkerström of Uppsala, Sweden An intense clinical abstracts session, chaired by Gregory Kaltsas and Hironobu Sasano followed, during which fi ve noteworthy abstracts from the annual conference were presented by Joy Ardill, Aurora Astudillo, Rosella Bettini, Phil Brown and Alberto Falchetti. Drs. Bettini and Strosberg were both awarded monetary prizes for their clinical research work, as were Pavel Szybinski and Vikas Prasad, both of whom presented their abstracts in poster format. The second day of the conference saw a clinical session addressing various locations, various problems with Wouter de Herder and Gianfranco Delle Fave chairing. Eric Baudin presented on neuroendocrine tumors of the lung; Bertram Wiedenmann on pancreatic NET; Joy Ardill of Belfast, Ireland, presents her clinical research abstract S. Karger AG, Basel Fax karger@karger.ch

Further novel developments in clinical research were later discussed in a second clinical abstracts session chaired by Martyn Caplin and Diego

Piero Ferolla, Leszek Krolicki, Tim Meyer, Anja Rinke and Jonathan Strosberg presented interesting developments mostly on treatment of

The day was closed with a session chaired by Reza Kianmanesh and Barbro Eriksson on dealing with established techniques and novel approaches of

3 plasms. Håkan Ahlman outlined the principles of surgical approaches to these patients while James Yao presented medical strategies for treating patients. Further novel developments in clinical research were later discussed in a second clinical abstracts session chaired by Martyn Caplin and Diego Ferone. Piero Ferolla, Leszek Krolicki, Tim Meyer, Anja Rinke and Jonathan Strosberg presented interesting developments mostly on treatment of neuroendocrine tumors with high relevance to daily routine. The day was closed with a session chaired by Reza Kianmanesh and Barbro Eriksson on dealing with established techniques and novel approaches of surgery in neuroendocrine tumors. Organized by primary tumors, Eric Lim presented results in lung NET, Irvin Modlin discussed intestinal NET and Alain Sauvanet reported on pancreatic NET. Piero Ferolla of Perugia, Italy, presenting his clinical research abstract Rosella Bettini (l) and Massimo Falconi of Verona, Italy. Dr. Bettini was awarded a prize for the presentation of her clinical research abstract focusing on non-functioning pancreatic endocrine tumors. Diego Ferone of Genoa and Rosario Pivonello of Naples

Always a welcome and entertaining speaker at ENETS meetings, Robert Jensen of Bethesda, Maryland, USA, sums up the most

Ashley Grossman of London, speaker of the ENETS Advisory Board, reports on activities of the Board during the gathering

Kalhan was recognized with a monetary award for his basic/translational research abstract presentation, Adenosine A2

ENETS member Rudolf Hyrdel of Martin, Slovakia. Prof. Hyrdel is also a member of the ENETS Advisory Board.

4 Greg Kaltsas of Athens. Dr. Kaltsas chaired a session on clinical research abstracts, as well as the abstract reviewing committee. Always a welcome and entertaining speaker at ENETS meetings, Robert Jensen of Bethesda, Maryland, USA, sums up the most important lessons to be learned from the Granada conference. Ashley Grossman of London, speaker of the ENETS Advisory Board, reports on activities of the Board during the gathering of the General Assembly in Granada. Atul Kalhan of Cardiff, Great Britain. Dr. Kalhan was recognized with a monetary award for his basic/translational research abstract presentation, Adenosine A2 receptor signalling mediates chromogranin A secretion from neuroendocrine tumors. ENETS member Rudolf Hyrdel of Martin, Slovakia. Prof. Hyrdel is also a member of the ENETS Advisory Board. The fi nal day of the conference offered a session on liver metastases chaired by Dermot O Toole and Dik Kwekkeboom. Danny Welch gave an impressive overview on key players in metastases development. Thomas Steinmüller thoroughly presented the data on surgical and ablative treatment options, while Kjell Öberg gave an overview of medical treatment of NET metastatic to the liver.

Ola Nilsson s lecture focused on the diagnosis of poorly

Irvin Modlin of New Haven, Connecticut, USA, opens his

She shared the stage with James Yao of Houston, Texas, in

abstract Eric Krenning of Rotterdam, Philippe Ruszniewski

with an award recognizing her noteworthy abstract

5 Ola Nilsson s lecture focused on the diagnosis of poorly differentiated endocrine carcinomas. Irvin Modlin of New Haven, Connecticut, USA, opens his lecture on surgery, established techniques and novel approaches as related to the gut. Catherine Lombard Bohas of Lyon, France. She shared the stage with James Yao of Houston, Texas, in looking at hot-off-the-press results of ongoing trials in the European Union and in the USA. Tim Meyer of London presenting his clinical research abstract Eric Krenning of Rotterdam, Philippe Ruszniewski of Paris, and Larry Kvols of Tampa, Florida, are all smiles. Guido Rindi, ENETS chairman, presents Mei Mei of Beijing with an award recognizing her noteworthy abstract presentation, Dual expression of -internexin in pancreatic endocrine tumors and its implications. Larry Kvols lecturing on Single or Monotherapy: Need for Combinations? Eric Lim of London. He presented his research on NETs of the lung.

Ursula Plöckinger and Ashley Grossman open the Granada conference, chairing the

Ulrich-Frank Pape and Andreas Pascher, both of Berlin, Germany, chat before the

Ulrich-Frank Pape of Berlin discusses his audit of the ENETS fi nances.

Ramage spoke on various localizations and problems, focusing on the rectum.

conference session on clinical research abstracts.

From left to right: Martyn Caplin, London; Barbro Eriksson, Uppsala; Ursula

Kwekkeboom, Rotterdam The Society this year recognized Rudolf Arnold for his

6 Ursula Plöckinger and Ashley Grossman open the Granada conference, chairing the session on ENETS Standards of Care. Ulrich-Frank Pape and Andreas Pascher, both of Berlin, Germany, chat before the opening of the ENETS General Assembly gathering. Ulrich-Frank Pape of Berlin discusses his audit of the ENETS fi nances. John Ramage of Basingstoke, Great Britain. Dr. Ramage spoke on various localizations and problems, focusing on the rectum. Hironobu Sasano of Sendai, Japan, co-chaired (with Greg Kaltsas of Athens) a conference session on clinical research abstracts. ENETS members at the Society s General Assembly meeting. From left to right: Martyn Caplin, London; Barbro Eriksson, Uppsala; Ursula Plöckinger, Berlin; Thomas Steinmüller, Berlin; Anders Sundin, Stockholm; Dik Kwekkeboom, Rotterdam The Society this year recognized Rudolf Arnold for his exceptional contributions to neuroendocrine tumor research. Left, Guido Rindi presents Prof. Arnold with a medallion commemorating the ENETS Life Achievement Award. Bertram Wiedenmann, standing behind Prof. Arnold, presented the dedication to his colleague.

Thomas Curran and Richard Warner of Mt. Sinai Hospital in New York in front of the poster presentation. Eric Van Cutsem of Leuven, Belgium.

The surgeon presented data on ablation with respect to liver metastases. ENETS chairman Guido Rindi congratulates Jonathan Strosberg of Tampa, Florida. Dr.

James Yao of Houston, Texas. He cooperated with Catherine Lombard-Bohas of Lyon, France, in reviewing hot-off-the-press results of ongoing trials in the European Union and in the USA.

Anne Couvelard, Atul Kalhan and Mei Mei presented new aspects of basic and translational research which will hopefully have some impact on understanding and managing NET disease. Drs.

The fi nal session, chaired by Beata Kos-Kudła and Matthew Kulke, highlighted combined therapies and current clinical trails, thereby summarizing some of the most interesting messages of this year s

7 Thomas Curran and Richard Warner of Mt. Sinai Hospital in New York in front of the poster presentation. Eric Van Cutsem of Leuven, Belgium. His lecture, Basic Evidence for Future Trials rounded out the session on combined therapy and clinical trials. Thomas Steinmüller of Berlin. The surgeon presented data on ablation with respect to liver metastases. ENETS chairman Guido Rindi congratulates Jonathan Strosberg of Tampa, Florida. Dr. Strosberg submitted two abstracts for presentation at the conference and was awarded for First line treatment of metastatic pancreatic endocrine carcinomas with capecitabine and temozolomide. James Yao of Houston, Texas. He cooperated with Catherine Lombard-Bohas of Lyon, France, in reviewing hot-off-the-press results of ongoing trials in the European Union and in the USA. The following abstract session, chaired by Raj Thakker and Ulrich Frank Pape, presented the most noteworthy basic and translational research abstracts of this year s conference. Anne Couvelard, Atul Kalhan and Mei Mei presented new aspects of basic and translational research which will hopefully have some impact on understanding and managing NET disease. Drs. Kalhan and Mei were awarded monetary prizes for their efforts in the basic/translational sciences. The fi nal session, chaired by Beata Kos-Kudła and Matthew Kulke, highlighted combined therapies and current clinical trails, thereby summarizing some of the most interesting messages of this year s ENETS Annual Conference. Catherine Lombard-Bohas and James Yao summarized the results of hot-off-the-press results of clinical trials in the European Union and USA, respectively. Larry Kvols discussed the need for new combinations of the substances tested in recent monotherapy trials, be it combinations with standard or new drug regimens or treatment modalities such as PRRT. Eric Van Cutsem gave an inspiring lecture titled Basic evidence for future trials explaining his perspective on the principles of how therapy development and testing in clinical trials should be handled. The scientifi c program was closed by a summary lecture given by Robert Jensen, who presented the lessons from Granada all participants might take home. All photos courtesy of Nancy Coste

8 Dr. Ursula Plöckinger, who is part of the working group steering the ENETS Patient Registry, addressed the Society s General Assembly in Granada, providing an update on this task force: The Registry has some major aims: 1. Epidemiology of NET, i.e. the documentation of natural history and defi nition of prognostic parameters; 2. Documentation and analysis of quality of care, the differences related to different European health care systems and treatment-related outcomes and their variations; 3. Improvement of the quality of diagnosis and therapy; and 4. Creating a network for basic science and clinical research. The working group composed of Barbro Eriksson of Sweden, Rocio Garcia-Carbonero of Spain, Beata Kos-Kudla of Poland and Ursula Plöckinger of Germany is currently preparing the tender for a web-based database. Participation in the project will be eventually open to all European nations and is ready to comply with EU rules on data management and ethical standards. The ENETS Registry Offi ce was established in Berlin for the purpose of organizing contracts and reports, as well as managing timelines and milestones. Of note is also a specifi cations book for the Registry, which has been approved by the ENETS Executive Committee. The Registry is in the process of forming advisory bodies: the Ethics and Data Security Board and also the Scientifi c Board. In the coming months, the working group will be considering tenders from several database companies; a database pilot phase is scheduled for early Also in the works are patient information forms, logistics for patient care, and quality of life questionnaires. Dr. Dermot O Toole helps steer the ENETS Centers of Excellence task force. He, too, addressed the Society s General Assembly in Granada, providing an update on the project: Rare tumors constitute a misnomer, as in total they represent 20% of total cancer cases. As the diagnostic and therapeutic algorithms diversify and expand in many solid tumors, the need for focused multidisciplinary decision-makers achieving the necessary standards in health care increases. Neuroendocrine tumors (NETs) are a complex tumor group with varied clinical expression (related to tumor origin, functional status, differentiation, grade) and therapeutic options. Indeed, treatment is not the simple remit of a surgeon or an oncologist. Modern standards demand structured input from a diverse range of specialists. The heterogeneity of NET in combination with their relative rarity underscores the needs for a Center of Excellence (CoE) approach. In an effort to ensure a more homogeneous approach to patient management, guidelines and standard-operating-procedures have been made available to patients and physicians in Europe via ENETS. A small number of dedicated Centers in Europe are currently providing a CoE approach to patients with NETs, however, there is a clear need to homogenize practices and increase the number of Centers to achieve a balanced health management strategy. ENETS strives to provide a high-quality platform to certify Centers where NET patients are currently managed. The aim is to rapidly certify a number of centers by providing a specialist-led certifi cation program. Some European countries have already established a standardized approach to NET patient health care and this should facilitate incorporation of existing structures within a European certifi cation program. Creation of CoE throughout Europe should unify health care standards for European patients with NETs. The aims of center certifi cation include: Ensure direct and measurable benefi ts to European patients with NET, as well as providing a comprehensive and easily maintained multidisciplinary program of health care in this fi eld; Provide standardized approaches to all clinical management issues: Implementation of guidelines; Access to all therapeutics (at both national and European levels); Quality assurance analyses; Encouragement of patient-directed initiatives (support groups and meeting patients educational needs); Allow for proper data collection with use of a recognized European data registry system (achieving meaningful numbers to make a real difference); Enhance the scientifi c knowledge fundamental to progress in this area. Establishing a NET CoE requires a formal structured partnership with core and secondary partners working together at the highest level of interdisciplinary cooperation and communication. The minimal core structure includes a NET specialist and a NET team (specialists from a number of pertinent disciplines) achieving a coordinated set of requirements within the CoE structure but also liaising with recognized secondary partners and, in some cases, affi liated partners. In this way, a structured approach to applying standards can be achieved and applied at all levels (clinical, documentary, educational and scientifi c). The process has been elaborated in three phases: 1. Preliminary Phase: ENETS, in collaboration with an independent medical care consulting group (GSG a European-accredited company involved in optimizing and implementing health care standards), constructed a Catalogue of Requirements for CoE certifi cation. The catalogue is deliberately designed with high standards but allows for a reproducible and homogeneous certifi cation process. The catalogue details all pertinent issues on CoE certifi cation including: structure (core, secondary partners); inter-disciplinary cooperation/communication; scientifi c activities; specialist s requirements; supportive care; documentation and quality assurance issues). This working document was presented to the ENETS Advisory Board in the autumn of 2008 in order to achieve consensus and validation; 2. Test-Phase of Certification: ENETS Advisory Board members were invited in November 2008 to participate in a survey relating to specifi c activities involving NET patients. The aim was to select NET centers to participate in the Test-Phase of Certifi cation. Six centers were chosen for the initial phase of certifi cation. The individual centers receive assistance and education in how to develop a CoE and how to prepare for an audit. In parallel, independent reviewers/auditors have been selected to perform assessment prior to certifi cation. The projected deadline for Test-Phase Certifi cation is the end of This will be followed by an audit of the ENETS European test-phase CoE program in order to streamline further CoE certifi cation processes; 3. Open Phase Certification: The proposed date for additional centers to apply for a certifi cation process is set for 2010.

10 th Annual ENETS Conference

10 th Annual ENETS Conference for the Diagnosis and Treatment of Neuroendocrine Tumor Disease 6-8 March 2013 Barcelona P R E L I M I N A R Y P R O G R A M 1 Scientific Organizing Committee Martyn Caplin,