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INCA Monthly Newsletter - August 2017 News Update

Netty on a vacation trip

Maybe some of you are planning or already started a trip on vacation -  INCA wishes you relaxing summer days!

INCA Members' News
INCA Member in Focus: Unicorn Foundation Australia
Medical News

INCA joins pan-European patient leaders
for a WECAN strategy meeting in Milan

The leaders of pan-European cancer patient networks, the "Workgroup of European Cancer patient Advocacy Networks (WECAN), met in Milan for a 2-day strategy retreat on 11 – 12 July 2017 in Milan, Italy.  These were two very productive days with the leaders of 15 pan-European cancer patient organizations. INCA is a member organization and was represented by Teodora Kolarova, Executive Director of International Neuroendocrine Cancer Alliance (INCA).  

WECAN is also the motto of the Workgroup of 20 European Cancer Patient Advocacy Networks (WECAN) that is aligning strategic approaches and undertaking joint action in cancer patient advocacy.


INCA discusses critical issues for the patient community
at IPSEN's Dialogue for Patient Care

On March 13, 2017 INCA took part in a meeting with Ipsen CEO David Meek, who invited three patient advocates from the United States and Europe to discuss such critical issues as patient empowerment, patient-centered research, involving patients in the drug development process, access to innovative drugs and the role of real-world data. The meeting “Dialogue for Patient Care”was featured in Ipsen’s Annual Report.  

Teodora Kolarova, INCA Executive Director, stressed on the paramount importance of involving patients in pharmaceutical work from day one.  “Luckily it is happening nowadays – we are going from treating the disease to treating the patient”, she pointed out.  “Involving patients in the design of clinical research and trials is key because this is how we can really contribute to a meaningful process: helping with research design, addressing some unmet needs, and also helping patients and the community understand what the benefits of these efforts would be”, Teodora Kolarova added. 

She also made a note of the challenge of meeting patients'expectations for the best and quickest solutions for care: “Healthcare is not only about innovative medicine; you have to be appreciative of the whole mix needed to provide care, especially with poorer countries or less wealthy countries. What we try to bring to the table is real-world evidence, showing that this is something that would really help and make a difference, and advocating that it happens as soon as possible.”


INCA Members' News

AMEND UK: First UK National Research Registry
For MEN1 & Pancreatic Neuroendocrine Tumours In Sight

AMEND, UK, has been working with a team of specialists and specialist centres, led by AMEND Patron, Professor Raj Thakker from Oxford, in developing a new National Research Registry for MEN1 and pancreatic neuroendocrine tumours (pNETs).  The Registry is now in its final stages of development and aims to enable researchers to look more closely at what drives the development of tumours in MEN1 and why some people are more badly affected than others.   It is hoped that this could lead to better tailored treatments in the future. The Registry will collect data on anyone in the UK with MEN1 and PNETs, and will include a patient portal through which patients can self-refer themselves.  With this consent, data will then be requested from the patient’s physician.

AMEND CEO Jo Grey has been a member of the development team, and is also a member of the Data Access Committee which will assess the individual requests from researchers to use the collected data.  We are now looking forward to seeing this initiative encourage large scale, collaborative research into MEN1 and pancreatic NETs within the UK.  The Registry will finally bring us in line with many other countries within Europe and beyond, encouraging further multi-national collaborative studies.

If you’d like to receive updates on the Research Registry and prompt access the Patient Portal link when it becomes available, click here sign up to AMEND’s List .

Read more on AMEND UK website

Guide to Understanding Carcinoid Syndrome
from Carcinoid Cancer Foundation, USA

Know the signs and symptoms — skin flushing, diarrhea, heart racing . . . it could be carcinoid syndrome!  How is it diagnosed, what are the treatment options, what questions should you ask your healthcare provider?  Read more in this new publication, Guide to Understanding Carcinoid Syndrome, from Health Monitor and the Carcinoid Cancer Foundation USA.

Download the publication from Carcinoid Cancer Foundation (pdf)

New NET Reference Guide from CNETS Canada

CNETS Canada has published an updated New NET Reference Guide.  The new handbook includes updated Diagnostics and Treatment sections.  It was developed to provide patients with information and support as they confront and adapt to a neuroendocrine tumour (NET) diagnosis. With this in mind, a wide range of experts – medical professionals and patients – have contributed to helping make this a practical, comprehensive resource that patients can refer to time and time again.

The guide is published in English and French languages.  

Download English guidebook

Download French guidebook

More from CNETS Canada

Second NET CoE and first lustrum for
the NET&MEN Cancer Association in Belgium

Since March 2017, Belgium now has a second Center of Excellence. After the university hospital of Leuven, now also the University Hospital of Antwerp has been rewarded with this honor. The CoE status is accredited by ENETS to medical centers complying to their high standards of specialization for treating NET’s and research, with a special focus to the benefit of the patients. 
For Belgium, a small country with slightly over 11 million inhabitants, this is great news. The geographical location of the two centers gives a good spread in the country and can save NET patients long and tiring travel.

 On November 12, NET&MEN kanker België vzw, the Belgian association for NET and MEN patients, will celebrate its first lustrum. 

Founded by the family De Graeve in 2012 and lead by Véronique De    Graeve, the association grew to a strong and respected organization. After  her mother Arlette passed away, Véronique De Graeve now has moved to  France and stepped back from the presidency, which has been taken over by Eddy Deneckere.  

The new CoE in Antwerp and honoring founder-president Véronique De  Graeve will be the main topics on the agenda of the annual info meeting.

Read more on NET&MEN cancer association, Belgium website

The NET Patient Foundation UK expands community support team

It has been a delight to be able to expand NET Patient Foundation, UK,  band of 1 nurse to a band of 2 this summer. A specialist nuclear medicine/NET nurse, Lindsey Devlin has joined our team to help support patients in the community alongside Nikie Jervis. We have around 30 support groups set up in the UK now, and this sort of support suits some, but others find the forum or social media pages more useful, or maybe a chat over the phone or face to face, and for many an email exchange suffices. 

We want to ensure that there are as many different forms of support as possible for our patient community, and so are also  delighted to  welcome 2 psychotherapists to the team. They will be focusing on providing specific psychological support to those who ask for it. We know whether you are newly diagnosed, living with chronic symptoms, uncertainty, misunderstanding, or just feeling low, someone who allows you to talk, without judgement, can help to find a way that works for the individual, to deal with living with a NET. Both are trained and qualified counselors and psychotherapists, with over 20 years experience of working with a wide variety of difficulties and in a number of settings including the NHS, charitable sector and higher education. 

Read more from NET Patient Foundation

NET Patient Foundation UK in The Telegraph 

NET Patient Foundation efforts were the reason to feature the importance of NET in Telegraph Daily, UK. The report featured a friend of the reporter with NET: “I knew about NETs only because the charity devoted to raising awareness and funding research – the Net Patient Foundation – is a member of Cancer52 , the umbrella organisation that represents 90 small cancer charities, all of whom are working for everyone affected by the rare and less common cancers. So, when Alan – a friend of mine, already suffering from Parkinson’s disease – was diagnosed with NETs, I was able to point him in the direction of the Net Patient Foundation, where he found a massive amount of information and support.“  

Telegraph featured that NET is the group of less common cancers, but these account for 50 per cent of all cancers – and 50 per cent of all cancer deaths – in the UK. Collectively, neuroendocrine cancers (NETs) are more common than testicular, ovarian, cervical and thyroid cancers, but are much less well-known and more likely to be misdiagnosed.

The full story in Telegraph Daily 

The NETRF 2017 Grant opportunities Request for Application
is now open

The Neuroendocrine Tumor Research Foundation (NETRF), USA, has announced a new round of scientific and clinical research grants, aimed at advancing the treatment of and the search for cures to neuroendocrine tumors (NETs).  

The research grants fall into three categories: Accelerator Grants, Investigator Grants, and Pilot Project Grants.  Made possible in part by a generous gift from the Margie and Robert E. Petersen Foundation, the grants vary from $50,000 to $1.2 million and run up to four years.

These are significant grants meant to transform our progress and continue our commitment to attract and support a committed community of investigators dedicated to a cure,” said Ron Hollander, NETRF executive director. “We are looking to attract the best ideas and the brightest researchers and physicians whose work can have a rapid impact on improving care for NET patients.”

 “In our 2017 grants, we focused on funding teams that could help us unlock the biologic and genomic drivers that cause these tumors to form and grow,” said George Fisher, M.D., Ph.D., co-chair, NETRF Board of Scientific Advisors. “For our 2018 grants, we are looking for a broad range of research especially translational and clinical projects that can lead to better therapeutics improving the lives of our patients.”

 “There have been many recent discoveries that have changed the way some cancers are diagnosed and treated,” said Daniel Chung, M.D., co-chair, NETRF Board of Scientific Advisors. “But the treatment of NETs lags behind. We need to accelerate our search for effective treatments and are looking for transformative ideas.”  

NETRF uses a rigorous peer review process that includes external expert reviewers and a Board of Scientific Advisors to select award winners. Interested applicants must submit a letter of intent by September 5, 2017. Grant awards will be announced in early 2018. 

Read more at NETRF website 

Video about already funded researchers

NPO PanCAN Japan succeeds in boosting legislative change
for cancer research support

 NPO PanCAN Japan has worked with other cancer support organizations last year to lobby Ministry of Health, Labour and Welfare (MHLW), congressmen and senators to amend Cancer Control Act of 2006. Revised Cancer Control Act was finally passed last December and we were very happy and proud to learn that the revision now has a clause, which says to support cancer research for rare cancers and deadly cancers. This clause allows MHLW to allocate more funding in those areas. 

Next step for NPO PanCAN Japan is to organize Rare Cancer Japan and work with Rare Cancer Europe to shape the future of international cooperative clinical trials and collaboration between two organizations.

Read more from NPO PanCAN Japan 

NET patients and Unicorn Foundation Australia CEO
appear at Senate Hearings

Late last year Senator Catrina Bilyk from Tasmania called for the introduction of a Senate Select Committee to look at Funding for Research into low Survival Cancers, after her own personal experience with brain cancer. 277 submissions were made to the committee from patients, carers, patient groups, research institutions, hospitals and clinicians from around the country and can be viewed here. From these submissions Unicorn Foundation CEO Simone Leyden, and patients Sandra Woods, Jan Mumford and Jackie Barreau, had the opportunity to speak further at hearings in Sydney and Melbourne about the lack of funding for research for NET cancers.

We are grateful to the Chair and to all the committee members for shining a light on the inequity in funding, appropriate infrastructure and adequate resources for low survival cancers in Australia.   

The full transcripts of the hearings can be read here.
Here are some snippets from those that attended on Unicorn Foundation Australia website

INCA Member in Focus

Unicorn Foundation Australia

Interview with Simone Leyden CEO / Co-Founder

When was the organization founded and how?
The Unicorn Foundation was formed in late 2009 and is the only Australian medical charity focused on NET cancers.  My brother Dr John Leyden and I co-founded the foundation with the support of key medical professionals.  Our NETs journey started when our sister Kate was diagnosed with pancreatic NETs and we experienced many of the issues surrounding rare and less common cancers – isolation, inexperience, lack of support, lack of knowledge and awareness. We wanted to help others going through a similar experience.

Could you summarize some highlights of projects and activity?
Since the inception, the foundation has worked closely with medical groups to raise the profile of NET cancer and foster greater knowledge and awareness.  

Some highlights include:
  • Funding the CONTROL NETs (Peptide Receptor Radionuclide Therapy - PRRT) clinical trial which has recruited 48 patients, with further funding to reach 72. Seed funding the NABNEC trial for patients with Neuroendocrine Carcinoma (NEC)
  • Deploying a website full of information for patients and health professionals which is updated regularly
  • Funding a specialist NET oncology nurse to maintain patient support services which average over 100 contacts per month
  • Formation of a Consumer Advisory Group made up of volunteers around Australia
  • Organising over 36 support groups around Australia each year
  • Organising NET patient forums and webinars 
  • Developing and distributing NET patient and Health Professional information booklets
  • Receiving monetary grants and improving the recognition of NETs at a Federal Government level
  • Raising awareness through World NET Cancer Day – “Let’s Talk About NETs” campaign
  • Convening international medical conferences including the 4th World Theranostics Congress in Melbourne in 2016, and the Asia Pacific Neuroendocrine Tumor Society (APNETs) conference in Melbourne in November 2018
  • Numerous poster and oral presentations at national and international medical conferences
  • Submissions made to various HTA bodies for reimbursement for drugs for NET Cancer patients
  • Reaching our $1million NET Cancer Research Fund
  • Appearing at two Senate Inquiry’s to give evidence into access to new and innovative cancer drugs in Australia, and research funding for cancers with low survival.
How do you see your future role?
Our mission is to improve awareness and knowledge of NETs within the medical profession and general public. We aim to foster patient understanding through support groups, our specialist NET Nurse helpline, patient forums and webinars and focus on raising much needed funding for research. We see our future role, as continuing to be the peak body for NET Cancer patients in Australia, to continue and grow our support services and to contributing to unique research to ultimately find a cure for NET cancer.

Unicorn Foundation Australia website
Medical  News

Study identifies new mutations linked
to hereditary neuroendocrine tumors

Pheochromocytomas and paragangliomas are rare neuroendocrine tumors with a strong hereditary component. Half the genes whose alterations confer hereditary susceptibility to develop this condition code for enzymes involved in the Krebs cycle, a metabolic route involved in cellular respiration. A study by the Hereditary Endocrine Cancer Group of the Spanish National Cancer Research Centre (CNIO), published in July 2017 in the journal Clinical Cancer Research,  identifies new genes associated with this cycle that are involved in the development of these tumors.

Approximately 40% of patients diagnosed with pheochromocytomas or paragangliomas considered to be the same condition but affecting different parts of the body harbor a germline alteration in susceptibility genes related to these diseases. This feature earns them the dubious honor of being the tumors with the strongest hereditary component known to date.

Read more from 

New Imaging Agent Locates Even the Smallest
Neuroendocrine Tumors

Boris Kuvshinoff II, MD, MBA Chief Medical Officer

A new agent, gallium-68 dotatate (Netspot®), recently FDA-approved and available at Roswell Park Cancer Institute, USA, can be used as a PET tracer instead of the glucose to identify carcinoid tumor even very small lesions significantly better than any currently available imaging. While NETs don’t consume glucose like other cancers, their cells do have plenty of receptors for the hormone somatostatin, which regulates the endocrine system. Ga-68 dotatate is a radioactive lookalike of the hormone that can bind to the somatostatin receptors, and highlight the tumor on PET imaging. Physicians plan to use Netspot PET to diagnose neuroendocrine tumors, determine treatment options, plan surgery, and monitor for recurrence.

Read more from Roswell Park Cancer Institute

New NANETS 2017 guidelines: Consensus Guidelines for The Surgical Management of Small Bowel Neuroendocrine Tumors

Both the European Neuroendocrine Tumor Society (ENETS) and North American Neuroendocrine Tumor Society (NANETS) have published consensus guidelines for the diagnosis and management of SBNETs but there remain many clinical scenarios for which the ideal approach is unclear. The objective of this article Consensus Guidelines for The Surgical Management of Small Bowel Neuroendocrine Tumors was to assemble a group of physicians specializing in the treatment of patients with SBNETs and to specifically address many of the most frequent questions that arise regarding their surgical management.  

2017 Los Angeles Neuroendocrine Tumor
Patient Educational Conference Videos

Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) 2017 Annual Conference took place on 24 June 2017.  It brought together distinguished NET experts and specialists from around the US to present on the latest NET treatments, research and resources. 

Videos from conference can be found in LACNETS Youtube channel 

ASCO Roundup of Advances in NET Treatments from NETRF

Every June, cancer specialists present their latest findings to their peers at the annual meeting of the American Society of Clinical Oncology (ASCO). Investigators must be selected to give podium presentations, poster presentations, or publish abstracts of their work in conference proceedings. It is both a competitive and prestigious opportunity to present to this influential gathering of more than 30,000 professionals. This year conference took place in Chicago from 2 to 6 June 2017. NETRF has compiled notes on the interesting developments in NETs in the areas of emerging treatment approaches, improving quality of life, improving predictive, prognostic, and diagnostic information. 

Read more from NETRF website

Presentations from European Cancer Patient Coalition meeting
in Belgium 

The Annual Meeting of European Cancer Patient Coalition (ECPC) took place in Brussels, Belgium, from 16 to 18 June 2017. ECPC is the voice of cancer patients in Europe. With over 400 members, it is Europe’s largest umbrella cancer patients’ association, covering all 28 EU member states and many other European and non-European countries.  Presentations of the conference are available to view and they include results of the ECPC Nutrition and Cancer Patient Survey, presentations on Increasing patient involvement in cancer research and treatment, and others.   

See all presentations from ECPC  

WHO approves Cancer Resolution

In the end of May 2017, The 70th World Health Assembly has approved the resolution on Cancer prevention and control in the context of an integrated approach, and noted the WHO report on cancer prevention and control. 

This resolution marks the first resolution dedicated to cancer by the WHO in over a decade, and provides a set of recommendations to control and prevent cancer. It complements the WHO's Global Action Plan for the Prevention and Control of Non-Communicable Diseases 2013-2020. The WHO 2017 Cancer Resolution represents a firm commitment of all countries to keep cancer control as a world health priority.

Read more from ECPC website

Download WHO resolution in pdf

Announcing the 6th Annual WEGO Health Awards

The WEGO Health Awards seek to recognize and champion the work of patient advocates, influencers, and experts helping others and transforming healthcare. The 2017 nominations were launched and everybody can nominate or endorse a nomination until 1 September 2017.
Award categories include: Advocating for Another; Best in Show: Blog; Best in Show: Community/Forum; Best in Show: Facebook; Best in Show: Instagram; Best in Show: Podcast ; Best in Show: Twitter; Best in Show: YouTube; Best Kept Secret; Best Team Performance; Healthcare Collaborator: Company;  Healthcare Collaborator: Patient; Hilarious Patient Leader; Patient Leader Hero; Lifetime Achievement; Rookie of the Year.  

Read more from WEGO Health Awards

Google Searches Could Help Scientists Track Cancer Incidence

Google search volume across the United States could help fill in the gaps on cancer incidence and mortality data, according to a new study by scientists at UC San Francisco and the University of Pennsylvania. This is particularly true for cancers not documented in national registries.  Countrywide internet search data offers clues to what interests the public, and can be used to estimate populations searching for specific topics. It’s likely that people Googling cancer-related health topics are patients, people that have yet to be diagnosed, or relatives of cancer patients, the study’s scientists suspected. “This public and easily obtained data could be a proxy for cancer registry data,” said Eleni Linos, MD, DrPH, associate professor of dermatology at UCSF and senior author of the study published June 28, 2017, in JAMA Dermatology.  The study looked at Google search volume data, cancer incidences and mortalities at the state level, from 2009 to 2013, for the eight most common cancers in the United States.

Read more from UCSF

Read more from JAMA Dermatology

Mapping the Patient Information Journey: Peer-to-Peer Healthcare 

Increasingly patients are turning to their peers online, using social media to seek out the experiences of other patients to help guide their healthcare decision making. Reading information in a brochure doesn’t compare to the ability to interact and ask questions in a social networking site.  Research conducted by the Pew Research Center shows that one in five Internet users have gone online to find others who might have health concerns similar to theirs.  That percentage is even higher – one in four – among those living with chronic disease, or caring for someone with a disease. Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But the number of patients saying they turn to their friends, family and other patients for day-to-day advice, and emotional support is higher.  US Department of Health and Human Services Chief Technology Officer, Susannah Fox, has labelled this trend as “peer-to-peer health care”.  This model of seeking and sharing information online has given rise to a new breed of expert patient – the ePatient. 

Learn more on practicing peer-to-peer healthcare on Internet
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