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INCA Monthly Newsletter - March 2019 News Update
INCA Members' News
Medical News

INCA Awarded First Prize for Poster in the Clinical Category at ENETS 2019

Photo: Teodora Kolarova  INCA Executive Director and Prof. Dermot O'Toole  Chairman of ENETS

The INCA poster “Unmet Needs in Global NET Care: Similarities and Differences in the Perspectives of Patients, Patient Advocates and NET Health Professionals” was awarded First Prize in the Clinical Category at the 16th Annual ENETS Conference – the biggest medical conference in NETs. INCA is deeply honored to have received the award, as one of its key priorities is informing the medical community about the experiences of patients living with NETs, as well as all the challenges they face with limited information about the disease, and inequalities in access to diagnostics and treatments.

Over 1600 NET healthcare professionals and experts involved in the wrap-around care for NET patients attended the 16th Annual ENETS Conference, which took place between 6 and 8 March 2019, in Barcelona, Spain. During these three days INCA had the opportunity to give a number of presentations, to chair a session and to discuss its achievements and future plans at a dedicated showcase in a fully-packed room of key stakeholders.

INCA would like to once again thank its Board of Directors and Membership for their energy and commitment, as well as everyone who supported the Unmet Needs Initiative. This assessment was funded through a grant from the Neuroendocrine Tumor Research Foundation (NETRF), a non-profit charitable organization and INCA member. Such an incredible achievement and recognition on the importance of this work for the authors who represent patient organizations and medical societies from around the world.

INCA Showcases its Strategic Projects at the ENETS Conference in Barcelona 

Photo: Simone Leyden  INCA President speaking on practice-changing clinical trials at the INCA showcase

INCA enjoyed the opportunity to discuss its work and plans for 2019 at a dedicated showcase in a fully-packed room of key INCA partners. Simone Leyden, INCA President, Dirk Van Genechten, Board Member and Chair of the Access Committee, and Teodora Kolarova, INCA Executive Director, presented INCA’s work under its 3 strategic pillars, putting a special focus on three of INCA current key projects - the Global Patient Information Pack, SCAN and Clinical Trials under One Open Space.

The Global Patient Information Pack is a three-year project to be developed as a global effort by a team of INCA representatives, the medical societies around the world, NET specialist nurses and allied healthcare professionals dedicated to improving education, patient pathways, patient information and experience. They will formulate the blueprint for a patient information package to be translated into 10 languages - English, Spanish, Italian, French, Arabic, Chinese (Mandarin), Japanese, Russian, German, Hindi. The materials will speak lay language and will find their way to the audiences via a variety of media - infographics, videos, diagrams.

Dirk Van Genechten presented SCAN 2019, a global survey that aims to measure access to diagnostics and treatment for neuroendocrine cancer patients around the world from the perspective of NET patients and healthcare professionals. The survey will address a global audience and will be carried out in 10 different languages.

Simone Leyden presented INCA’s effort to build a user-friendly space offering information on practice-changing clinical trials for neuroendocrine tumors. INCA President led a discussion on the added value that patients’ input can bring to clinical trials and methods of identifying the practice changers currently on field.

With the showcase invitation sent to healthcare professionals around the globe, INCA asked for a list of practice-changing trials that are currently underway or in development and for a list of barriers to research. It seems challenges are universal and include: funding; bureaucratic /national regulations; individual rather than scientific societies’ initiatives; centralization of patients - issues over travel for study visits; large number of patients falling outside of  centers offering trials; limited sites opened for many trials; and access to studies – the list goes on. It was encouraging to see unanimous agreement that only by working in close collaboration, medical experts and patient organizations will be able to overcome these barriers together.

Photo: INCA representatives at ENETS, from left to right: Yoshiyuki Majima  INCA Board Secretary and President of PANCAN Japan, Dirk Van Genechten  Board Member and Vice-Chair of VZW NET & MEN Kanker, Belgium, Mark McDonnell  INCA Treasurer and Chair of NET Patient Network, Ireland, Christine Rodien-Louw  INCA Board Member and President of APTED, France, Teodora Kolarova  INCA Executive Director, Simone Leyden  INCA President  and CEO of the Unicorn Foundation, Australia, Catherine Bouvier  INCA President-Elect and CEO of NET Patient Foundation, UK, Ron Hollander  INCA Honorary Member, USA, Tore Aasbu  CarciNor, Norway

INCA was also involved in a number of presentations and scientific sessions, including a session on “Risks and Benefits of Treatment”, co-chaired by Prof. Kjell Oberg and Teodora Kolarova, with Simone Leyden speaking about the importance of Patient Involvement in Data Collection – Simone highlighted the important achievements in the area of assessing and studying NET patient quality of life, and the PLANET Registry and associated electronic Patient Reported Outcome (ePRO) phone App, developed by the Unicorn Foundation, which will potentially be considered for a global launch as well. During the same session, Dr. Simron Singh elaborated on the role of standardized value frameworks in NETs, while Prof. John Ramage discussed the significance of Patient Reported Experience Measures and outcomes measures in clinical trials and a patient satisfaction questionnaire to be adopted in the ENETS Centres of Excellence.

European Cancer Organization (ECCO) Patient Advisory Committee (PAC) Discusses Priorities in Patient-Focused Multidisciplinary Cancer Care

Photo: From left to right, Teodora Kolarova  INCA, Sema Erdem  Europa Donna, Anne-Marie Baird  Lung Cancer Europe, Sarper Diler  Myeloma Patients Europe, Kathy Oliver  International Brain Tumor Alliance, Ken Mastris  Europa Uomo, Anita Kienesberger  Childhood Cancer International, Pascale Blaes  ECCO, Gilliosa Spurrier  Melanoma Patients Europe, Agnese Abolina  ECCO, Ian Banks  ECCO PAC Chair, Richard Price – ECCO   

INCA took part in a very productive and insightful meeting of the European Cancer Organization (ECCO) Patient Advisory Committee (PAC) on 25 March in Brussels, Belgium. Ten leaders of umbrella cancer patient organizations in Europe and beyond interacted in an open discussion on the priorities of the forthcoming ECCO2019 European Cancer Summit on 12-14 September 2019 in Brussels, which will bring together worldwide leaders from cancer care, research, patient advocacy and public-private sectors in a unique multi-stakeholder forum The theme of the second edition of the ECCO Summit is: “European Cancer Care: Across Borders”, and the ECCO PAC is very involved in the design of the Summit program to make sure that the patient voice is well heard.

The Committee also discussed key projects like the ECCO’s current Essential Requirements on Quality Cancer Care papers, including the most recent on one pancreatic cancer where INCA will be represented by Dr. Piero Ferolla from A.I. NET Italy. One Specific task is to review and assess of the situation for neglected cancers with a special focus on pancreatic cancer, highlighting the challenges and opportunities for improving detection, diagnosis and access to expert clinicians in order to increase the quality of care and outcomes, and raising awareness within the EU policy and research agenda

Other projects in focus were Quality Cancer Care Week 2019, and the ECCO Codes of Cancer Practice, based on the importance of providing, at the European level, an enabling “toolbox” that will help support regional and national planning initiatives to improve cancer outcomes.  One component of this toolbox is a series of European “Codes of Cancer Practice” which describe in a succinct and accessible way the key components of a plan to improve cancer outcomes in relation to individual cancer anatomical sites or cross-cutting activities, which affect all cancer patients. 

INCA Members' News

Join the CNETS Canada 2019 National NET Patient Conference Livestream on April 6th

CNETS Canada 2019 National NET Patient Conference could be joined remotely via a Livestream on April 6th, 2019 from 8:30 am - 4:30 pm EST
Here are some useful steps that can guide you to launch the livestream.

Click on the following link:

If this is your first time using this service, you will be asked to either download the client or utilize the "in browser" experience. If you have a desktop or laptop running the latest version of Chrome, we would suggest you use the "in browser" solution. You will not need to download any software, and will be able to join the conference just using your browser.

If you are using an iOS or Android mobile device (iPad, Galaxy, etc.) upon clicking the link, you will be asked to download the VidyoConnect application. This is a secure and free download. Once you have installed this application, all future requests using this format, will automatically open the VidyoConnect application.

Alternatively, you can call into the meeting via phone:

Canada & USA Toll-Free  18009064077,,710714321#

Canada Local      1(647) 557-8354,,710714321#

United Kingdom  44 2381680023,,710714321#

Hong Kong  852 58080549,,710714321#

For a full country dial-in list please email:

Or join using a H.323 or SIP endpoint using IP and enter meeting ID 710714321#

Conference delegates will include over 200 NET patients, patient leaders, caregivers and their families from across Canada. Presenters will be the top multidisciplinary NET specialists from across the country as well as other related health care professionals with an interest in NET cancer.
Read more about the conference here.

Facebook LIVE with NET Expert Xavier Keutgen, MD

On March 18,  the Carcinoid Cancer Foundation hosted a Facebook LIVE event with Xavier Keutgen, MD.  Dr. Keutgen, a surgical oncologist with particular expertise in treating neuroendocrine, thyroid, parathyroid and adrenal tumors,  spoke about surgery for people living with neuroendocrine tumors (NETs), the importance of finding the primary site, how surgery fits into a treatment plan, and other treatment options.  Watch the archived event on Carcinoid's Facebook page. In just 24 hours the event had nearly 3,000 views; 1,589 engagements; and 224 comments and questions. Read more about Dr. Keutgen who heads up the Neuroendocrine Tumor Program at the University of Chicago in Illinois.

Update on Local Councils Project from NET Patient Foundation, UK 

In October 2018, Hackney Council (A London Borough) unanimously passed a motion on rare and uncommon cancer.
On the 28th March, City and Hackney Clinical Commissioning Group and Hackney Council, held a joint “rare and uncommon cancer” seminar with presentations and discussions on Neuroendocrine Cancer, Hepatocellular Carcinoma, HPB cancers and Sarcoma.

There were presentations from clinical leads, surgeons and specialist nurses talking about diagnosis, treatment pathways, GP resources and the advances in treating some rare and uncommon cancers.

Nikie Jervis, NETPF Patient Support & Information Nurse Specialist, gave a brief overview and spoke about some of the key issues related to malignant Neuroendocrine Neoplasms (Neuroendocrine Cancer):
 - the complexity of a type of cancer that can originate almost anywhere in the body, that may produce a multitude of differing symptoms - that often mimic more common conditions - resulting in low suspicion of cancer and delayed presentation and diagnosis.
 - the limited awareness and understanding of the diagnosis once made, with an assumption that longevity equals good, indolent equals benign, looking well equals being well and the reality that not all cancers are treated with chemotherapy.
 - the often unacknowledged huge physical and emotional burden of disease, felt by those living with Neuroendocrine Cancer: feelings of isolation, exhaustion, anxiety and depression that are compounded by the unpredictability of the disease and its symptoms.

Neuroendocrine Cancer patient and retired GP, Paul, also presented at the event and spoke about his experiences with Neuroendocrine Cancer. "I found it remarkable that I might have a stage four cancer inside of me when I was feeling reasonably fit but was told it might have been growing inside of me for 3-4 years... The advice I would give to patients now is see the NET Nurse Specialists and attend a patient support group. I didn't think I would find it at all helpful but actually found it incredibly useful”

NET Patient Foundation wants to spread this format across all councils in the UK. For more information click here

2019 Pheo Para International Conference

The Pheo Para Alliance in partnership with Upstate Medical University is presenting the 2019 Pheo Para International Conference on June 6-8, 2019 at the Central New York Biotech Accelerator in Syracuse, New York.

The event is open to patients and families, healthcare providers, and researchers. Program topics will include Surgical Approaches for Pheochromocytoma and Paraganglioma (PPGL), Non-Surgical Approaches for PPGL, PPGL Diagnostics, and Genetic Implications for PPGL.

Keynote speaker for the event is Karel Pacak, MD, PhD, DSc. Dr. Pacak is the Senior Investigator, Section on Medical Neuroendocrinology at the National Institutes of Health in Bethesda, Maryland, USA.

For those unable to attend, the event will be live streamed and video will posted to the Pheo Para Alliance’s website after the event.

For more information or to register, contact Stephanie Alband, Executive Director of the Pheo Para Alliance at

NET Treatment and Wellness Care Plan Launch

Last month the Unicorn Foundation Australia launched their NET Treatment and Wellness Plan, designed in collaboration with the Australian Cancer Survivorship Centre - A Richard Pratt Legacy (ACSC), to help NET cancer patients and families keep track of all aspects of their treatment and care. The online document provides a central location to record important information related to their diagnosis, treatment and ongoing care.

This resource has been development for two years in response to the numerous requests from patients who wanted more control over their care, especially when seeing various healthcare professionals over numerous appointments. The Unicorn Foundation is now seeking feedback from patients and healthcare professionals to make sure that it is a resource that can be easily used and understood. The goal of the plan is to then be aligned with the Australian NET registry (PLANET) so that all patients will have it updated at a central location.

For more information please link here.

Medical  News

The Role of Disease Label in Patient Perceptions and Treatment Decisions in the Setting of Low-Risk Malignant Neoplasms

To determine whether disease label plays a role in patient decision making in the setting of low-risk malignant neoplasms a discrete choice experiment conducted using an online survey of 1314 US residents has been done. Its results show the disease label plays a role in patient preference independent of treatment risks or prognosis. Raising the threshold for biopsy or removing the word cancer from the disease label may mitigate patient preference for aggressive treatment of low-risk lesions. Health care professionals should emphasize treatment risks and benefits and natural disease history when supporting treatment decisions for potentially innocuous epithelial malignant neoplasms.

Read the full article here.

Understanding Pragmatic Outcome Measures in Oncology

A recent study explores the topic of outcomes measurement with the goal to identify metrics of high clinical value, meaningful for both patients and clinicians, but which can be measured efficiently and be put “at the right scale”.

The published report reflects 25 interviews with stakeholders from the European oncology community: patient organizations (INCA included), clinicians and individuals from various oncologic professional bodies. The results identify a standard set of eight “pragmatic outcome measures” in cancer care that have value to both clinical teams and patients.

Read the full report here.
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