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

INCA at the First Global NET Leadership Workshop

For the first time Presidents of each neuroendocrine society around the globe were invited to join together at a meeting in Palma de Mallorca, Spain to discuss key topics from a global perspective. The first NET Leadership Workshop included representatives from: Asia Pacific (APNETS), China (CSNETS, CNETS), Australia/New Zealand/Canada (CommNETs), Japan (JNETS), North America (NANETS) and South America, as well as INCA. Each were given the opportunity to present their organization, their function and achievements, which was a learning experience for all. What was clear, is that each organization and those involved are passionate about improving the lives of NET patients and that each face similar issues no matter their geographic location.

The goal of the meeting was to look at opportunities for sharing pathways and collaboration. Topics discussed and debated were: the ENETs Centre of Excellence model (could this go global?); joint forces for patient activities; research pathways; education activities and culminating in the idea of a World NET Summit in 2020. It was a fantastic meeting with everyone putting their energy behind greater collaboration and working with patients, with the first project to be worked on being “closing the information gap”. The collation of patient information in multiple languages, for access by patients and clinicians dealing with NETs. This project is already underway, and we look forward to more meetings like this and engaging our global community further.

INCA Joins World Cancer Day with I Am Ready, and I Will Make a Change for NETs Campaign

#WorldCancerDay is on February 4, and this year INCA is joining the campaign by highlighting three key needs of NET patients: greater awareness about NETs among physicians, equity in best treatment everywhere and more research in NETs with patients involved. INCA is launching a one-week global call for action on social media platforms to boost awareness.

Keep an eye on INCA's Facebook and Twitter pages between 28th January and February 4th and get ready to join I am ready, and I will make a change for NETs.

Look in social media for:
• healthcare professionals who may have never heard of NETs before;
• medical students who may be interested to know more about NETs;
• politicians and activists who could give their voice in support of NETs;
• representatives of regulatory bodies like ministries, commissions, and institutes all over the world, who may make a change if they knew more about NETs;
• governmental institutions, scientific research institutes that could invest into more research in NETs with patients involved.

Engage them with INCA's posts to make a change for NETs.
#changefornets #letstalkaboutnets #WorldCancerDay #IAmAndIWill

WECAN Academy - for Stronger and Better Patient Advocates

As member of WECAN, the Workgroup of European Cancer patient Advocacy Networks, INCA was invited to discuss the objectives and format of the WECAN Academy, a new educational program for the cancer patient community. The WECAN Academy Program Committee Meeting took place in Milan on January 15 and 16, 2019.

Supported by the European School of Oncology (ESO), the WECAN Academy will hold two major training meetings in 2019 for patient advocates of the 21 European cancer patient umbrella networks: SmartStart will teach the basic knowledge in cancer patient advocacy, and the WECAN Masterclass in Cancer Patient Advocacy will run sessions and workshops for advocates on the intermediate and expert knowledge level. The Masterclass was held by ESO very successfully in previous years and WECAN members are grateful for ESO’s continued support and collaboration.

Both meetings will be complemented by an ongoing educational program featuring webinars and a web-based WECAN Advocacy Knowledge base.

INCA is proud to have contributed to the development of the WECAN Academy educational program for the cancer patient community. INCA Executive Director, Teodora Kolarova spent two intense days with fellow patient advocacy leaders to outline a thought-provoking educational program in the three tracks “Advocacy Tools & Skills”, “Healthcare Systems & Policy” and “Research & Data”. The two conferences will be held on 6-9 July 2019, which will also be the launch of the WECAN Academy.

INCA Members' News

MEN2B Patient Films Start Production

AMEND’s activities for 2019 have already begun with the planning and organisation for the upcoming patient films on multiple endocrine neoplasia type 2B (MEN2B, AKA MEN3). Thanks to a patient group grant from the UK’s Society for Endocrinology and members’ fundraising efforts, 3 films will be produced featuring 3 different MEN2B patients; baby Asher, teenage Ethan, and twenty-something Kristina, together with medical specialist input from Great Ormond Street Hospital for Children in London. Each film will explore how and when the stars were diagnosed, providing a moving contrast between early and late diagnosis, and how patients and their families deal with day-to-day life with MEN2B. The films will not only be informative for other patients, but will also aim to educate a range of different health professionals to encourage the earlier diagnosis that is so desperately needed for this patient community. The films are expected to be complete by April when they will be available free to view on  AMEND's website and YouTube channel.

CNETS Canada Announced the 2018 NET Research Grant Recipients

CNETS Canada is committed to improving the quality of life and survival for NET patients across Canada and in support of this vision introduced a new Research Funding Framework in 2016. The 2018 NET Research Grant will provide grant-in-aid for three projects up to a maximum of $40,000 per project. The third NET Research Grant was made possible thanks to the tremendous fundraising efforts of Bailey and Jonathan Daniels. In their honour, this NET research grant will be named The Daniels Constellation Grant for Neuroendocrine Cancer Research.

The NET research funding priorities were determined through consultation with the NET patient community, and input from CNETS Canada’s Scientific and Medical Advisory Board (SMAB). To be eligible for the 2018 NET Research Grant, the project must be a clinical trial or a clinical or fundamental research project (including animal or cellular models) to examine issues relevant for the diagnosis and treatment of Neuroendocrine tumours (NETs).

And the selected grant recipients are:

Cognitive assessment of GI NET patients with carcinoid syndrome by Dr. Rachel Goodwin, Medical Oncologist from Ottawa Hospital Research Institute (OHRI);

Laying the groundwork for a simple microRNA-based blood test to diagnose and monitor all neuroendocrine tumors by Dr. Neil Renwick, Clinician Scientist, Pathology & Molecular Medicine from Queen's University/Kingston Health Science Center, and

Extending immunotherapy to NET patients with radiotherapy: A correlative study, by Dr. Sten Myrehaug
Physician, Radiation Oncology from Odette Cancer Centre, Sunnybrook Health Sciences

Read more about the grant recipients.

Neuroendocrine Tumor Research Foundation's Researchers Named in Top 1% Worldwide

Five scientists helping Neuroendocrine Tumor Research Foundation (NETRF) advance treatments of neuroendocrine tumors (NETs) have been named among the most influential in the world for 2018. Clarivate Analytics identifies the most influential researchers by the number of citations they receive in their field for the year. The five researchers are:
• Hans Clevers, MD, PhD, Royal Netherlands Academy of Arts and Sciences, Netherlands, principal investigator of a NETRF multi-year, $1.2 million Accelerator Award to create mini-organs in laboratory dishes (organoids) of NETs for drug testing.
• Matthew Meyerson, MD, PhD, Harvard University, Dana-Farber Cancer Center, Broad Institute, USA, is the principal investigator of a NETRF Accelerator Award aimed at identifying genomic and epigenetic causes of small intestinal NETs.
• Carl June, MD, University of Pennsylvania, USA, is part of a team of researchers that evaluated CAR T-cell therapy in NETs.
• Bradley Bernstein, MD, PhD, Massachusetts General Hospital, USA. evaluated epigenetic drivers in NETs.
• Todd Golub, MD, Broad Institute, USA, has served as a member of NETRF's Board of Scientific Advisors.

NETRF, a leading funder of NET research says it counts on elite, world-class scientific minds to accelerate progress in NETs. “Our understanding of neuroendocrine tumors lags behind other cancer types,” said Elyse Gellerman, NETRF Chief Executive Officer. “We’re proud to work with these internationally recognized experts to search for cures and better. treatments for NETs.”
Read more here

First NET Specialist Nurse in the University Hospital of Antwerp

(Photo) Dirk Van Genechten, Vice-President NET & MEN Kanker vzw, Belgium, and Kathleen Vandenborne, NET-nurse at

Kathleen Vandenborne is the first NET specialist nurse of the University Hospital of Antwerp (UZA), one of the two Center of Excellence in Belgium. This is fantastic news for NET patients in greater Antwerp.
Although specialized nurses are not yet official in Belgium, hospitals and the Ministry of Health in Belgium have acknowledged the benefits of having specialized nurses, which have been proven in other countries, like the UK.

The Ministry of Health has plans to make such a function official.
Medical  News

Orthopedia Homeobox Protein (OTP) Is a Sensitive and Specific Marker for Primary Pulmonary Carcinoid Tumors in Cytologic and Surgical Specimens

In its latest issue, the Journal of the American Society of Cytopathology shared  promising results for OTP showing specificity for pulmonary carcinoid tumors. Orthopedia homeobox protein (OTP) was recently demonstrated to be a pulmonary neuroendocrine marker showing specificity for pulmonary carcinoid tumors in histologic sections. Little is known of OTP performance and specificity for pulmonary neuroendocrine tumors in lung fine-needle aspiration (FNA) cell blocks (CBs), however.

A team of researchers from the Department of Pathology and Laboratory Medicine, Weill Cornell Medical College in New York have evaluated OTP expression in lung non-neuroendocrine and neuroendocrine tumor cell blocks to determine its diagnostic utility in these specimens.

The nuclear OTP expression showed an 80% to 83% sensitivity and 100% specificity for pulmonary carcinoid tumors in cytology and surgical specimens. The positive predictive value and negative predictive value of OTP immunohistochemistry for pulmonary carcinoid tumors were calculated to be as follows: 100% and 89.5% on cytology and 100% and 87.9% on surgical specimens, respectively.

Read the full publication on Science Direct.

Accurately Diagnosing Patients with NETs

A recent discussion outlines how to accurately diagnose patients with NETs. The discussion between panelists Simron Singh, MD, Odette Cancer Centre and Jonathan R. Strosberg, MD, Moffitt Cancer Center was shared on OncLive Peer Exchange. Acknowledging that most of the NETs symptoms are nonspecific, the medical experts cover important topics, including:

Accurately Diagnosing NETs
Future Outlook: Improving the Management of NETs
Novel Therapies Emerging for the Treatment of NETs
Chemotherapy for NETs: Temozolomide
Somatostatin Analogs and PRRT: Treatment Considerations
Peptide Receptor Radionuclide Therapy for NETs
Targeted Therapies for the Treatment of NETs
Somatostatin Analogs in the Treatment of NETs
Surgical Considerations for Patients With NETs
Therapies for Controlling Symptoms of NETs
Recognizing the Symptoms of NETs
Classifying and Treating NETs
The Underlying Biology and Prevalence of NETs

Click any of the topics above to watch the video of the related discussion.
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