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INCA Monthly Newsletter - July 2019 News Update
INCA Members' News
Member in Focus
Medical News

INCA at First WECAN Academy for Cancer Patient Advocates

Photo: Group photo of all cancer patient advocates at the first WECAN Academy

Cancer patient advocates from 26 European countries, active across a wide spectrum of cancer types, spent four days in July at the first training course, developed and run by advocates.

The intensive training ‘Academy’ was organized by WECAN, an informal network of leaders of cancer patient umbrella organizations, of which INCA is a member. Ambitious and forward-thinking as it was, the academy can be considered a milestone for European advocacy in many ways.

The course sessions covered essential practical skill sets: how to establish, manage, fund and run a non-profit organization, how to gather patient-generated evidence, how to get your voice heard. A primer in healthcare systems, policy and access to new treatments across Europe was also offered. The advocates were introduced to the world of medical research, drug development, clinical trials, evaluating evidence, and patient involvement in research.

The course gathered people with varying experiences and needs: leaders of national and/or umbrella organizations who were looking to train up their teams; patients who are interested in setting up an advocacy organization.

INCA is pleased to have had 5 participants in the educational initiative: Mette Jackson (CarciNor Norway), Mark McDonnell (NET Patient Network Ireland), Fabienne Pfyffer and James Nagelmackers (Victory NET, Switzerland) and Teodora Kolarova (INCA Executive Director).

Half the presenters were patient advocates themselves. The topics and presentations were extremely relevant, and delivered with notable passion and motivation. The content and the structure of the WECAN Academy built on work done by many different groups of patient advocates over previous years.

INCA Poster on SCAN to Be Presented at the NANETS Annual Multidisciplinary NET Medical Symposium


INCA is proud to share that the abstract Survey of Challenges in Access to Diagnostics and Treatment for NET Patients (SCAN) has been selected for a poster presentation at the upcoming Multidisciplinary NET Medical Symposium (October 3-5, Boston).

This is a valuable opportunity for INCA to focus the attention of the expert medical community on outstanding issues for NET patients, such as equity in access to optimal diagnostics, treatment and care globally. Measuring access to diagnostics and treatments for NET patients is the main objective of SCAN, which is to be conducted among NET patients, general practitioners and NET specialists, in over 10 languages via a self-administered online questionnaire.

The NANETS Annual Symposium provides a forum for members of the professional neuroendocrine community to come together to discuss new diagnostic and therapeutic techniques, optimal multidisciplinary care, and the future of neuroendocrine tumor research.

INCA Members' News

AZNETS Is Growing

Photo: Benard Rono, AZNETS Chairperson at Kisuum, Kenya

This month, AZNETS has grown stronger within and beyond Kenya. The efforts to raise awareness about neuroendocrine tumors in Africa have been recognized by many physicians, who have offered to commit their vast and much-needed knowledge and skills to the cause.

In the Lake Region town of Kisumu in Kenya, AZNETS has received requests by three more NET patients to join the support group through a referral by a physician. This is a remarkable stride in the awareness campaign which aims to improve patients’ access to NET information, treatment, and psychosocial support in a resource-limited setting. The first NET patient support group meeting will be taking place at the physician’s office in the coming weeks.

South Africa is also joining the collaborative effort. A South African nuclear medicine physician is willing to support the NET awareness campaign and train more physicians in nuclear medicine. This will build the capacity of African physicians to diagnose neuroendocrine tumors and also help increase the pool of nuclear medicine physicians. This is very much in line with the advocacy effort to introduce multidisciplinary teams to manage NETs in Africa. Physicians from Nigeria and Ghana have benefited from a similar program.

AZNETS is determined to improve NET awareness, as well as to ensure the timely diagnosis and treatment of NET patients in Africa in spite of the various conspicuous challenges.

Phaeo/Para Crisis Card from AMEND

Thanks to an offer from two endocrinologists at St Bartholomew’s Hospital in London, AMEND has produced a Phaeochromocytoma & Paraganglioma Crisis Card.  A phaeo/para crisis is a possibility for anyone with either or both of these types of functioning tumors. The crisis causes sudden high blood pressure due to a sudden increase in the production of the stress hormones, catecholamines: this can, at worst, cause strokes or heart attacks. The cards, which are based on an original version from St. Bartholomew’s, will be distributed nationally throughout the UK via specialist centers, for onward distribution to appropriate patients who are either awaiting surgical removal of one of these tumors, or whose tumors are inoperable. The card lists prescription and over-the-counter medicines to avoid and have space for emergency contact details and for listing currently prescribed medication. They can be shown to pharmacists and medical staff to ensure that they are aware of the risks of these tumors.

Clinical Trial Supported by APTED: More Recognition by Endoscopists for r-NETs Is Needed

A study conducted thanks to the participation of 329 patients with 345 rectal neuroendocrine tumors non-metastatic r-NETs of endoscopy-estimated sizes ≤2 cm, recruitment supported by APTED, and conducted in 16 French hospitals with  recently published important findings. The survey concludes the resection of small rectal neuroendocrine tumors often requires multiple procedures. Training of endoscopists is necessary in order to better recognize these tumors and to perform the appropriate resection technique. The study tries to improve the management of non-metastatic rectal neuroendocrine tumors diagnosed endoscopically as in Western European countries, r-NETs are not yet sufficiently recognized by endoscopists (18%).

Read the full publication here.

2-nd Annual Canadian NET Medical & Scientific Meeting Upcoming

The CNETS Canada sponsored 2nd annual Canadian NET Medical & Scientific Meeting (CNMSM) will bring together up to 125 multi-disciplinary NET specialists and colleagues with an interest in NETs, to provide a pan-Canadian approach to NET medical education and mentorship, as well as create a forum for discussions, case presentations and lectures on the most important topics impacting NET treatment and care in Canada.

Read the full programme of the event here.

MENETS Starts a Personalized Program for Daily Living with NENs

In July the Middle East Neuroendocrine Tumor Society started the first Intensive Personalized Program for Daily Living with NENs. The three-day in-residence workshop is part of a four-month program. The program meets the patient and its caregiver together with a NET clinician, a dietitian, a nutritionist and a coach.

Four couples composed of a patient and a family member participated. MENETS is measuring the program effectiveness with the Adult Carer Quality of Life Questionnaire (AC-QoL) and an updated tool for patients.

“Seeing people standing straighter, eyes more open, and hearing stronger voices are a gift to us all. We are in the process of sourcing funding to run additional workshops in Israel this year and then offer them internationally.”, says Michael Rosenberg, MENETS Founder.

NETRF-Funded Finding May Help Predict Pancreatic NET (pNET) Recurrence

Photo: Ramesh Shivdasani, MD, PhD, Lead Investigator
A group of NETRF-funded researchers has discovered molecular information that may help predict recurrence of non-functional pancreatic neuroendocrine tumors (pNETs), which do not release excess hormones into the bloodstream. In a paper published today in Nature Medicine, the researchers describe new subtypes of pNETs with vastly different risks of recurrence.

Lead investigator Ramesh Shivdasani, MD, PhD, Dana-Farber Cancer Institute, Harvard Medical School, said the finding moves us closer to being able to identify patients with a high risk for metastasis at diagnosis and initial treatment. “These patients can be monitored vigilantly for recurrent cancers, which may be treatable if detected early, while patients with the less aggressive kind of pNET can be advised that the prognosis is excellent.”

Read the full article on Nature Medicine

Educational Videos on Pheocromocytoma and Paraganglioma

Videos from the 2019 International Pheo Para Conference held in June are now available for viewing. Leading pheo para experts from across the globe, including Dr. Karel Pacak, from the National Institutes of Health, discuss diagnostics, medical treatment, genetics, surgical approaches, clinical trials, pediatric management and patient support services.

You can access the videos from the webpage of Pheo Para Alliance.  

Member in Focus

NET Italy Onlus in Focus

NET Italy was founded in 2011 to help fulfil the needs of those diagnosed with neuroendocrine cancer and their caregivers, i.e. finding correct information about their disease, putting them in contact with other patients with whom to exchange experiences. NET Italy is an “association of patients dedicated to patients”. Its registered office is at the University Hospital of Bologna, Policlinico Sant'Orsola-Malpighi, although it mainly operates through the most important social networks (Facebook, Instagram, Twitter) which allows greater coverage and direct contact with other advocacy groups and patient associations from all over the world.

NET Italy is a nonprofit association (Onlus), operating on a volunteer basis with the aim of acting for the benefit of the whole NET community. It promotes health education and information about neuroendocrine tumors, as well as practical support to those affected by these diseases. NET Italy Onlus encourages the development of studies and research and spreading of patient-related outcomes since the team is firmly convinced that information is the first line therapy for any cancer patient and communication is one of the best ways to break down the wall of isolation surrounding the patient.

One of NET Italy’s goals is to provide the initial information on reference centers since a specific and appropriate approach involving more specialists is necessary. Last but not least, in a world going at an incredible speed where people have no time even for themselves, NET Italy is working hard, and its volunteers are happily offering their time to listen to patients and caregivers, supporting them by talking “their language” as they are perfectly aware of their needs and requirements.

Last year NET Italy implemented an ambitious training project targeted at general practitioners (it also included sarcomas and head & neck tumors). An approximate number of 500 healthcare professionals were covered in 2018 and the plan is for this project to be duplicated in other areas.

Other important initiatives put in place by NET Italy are the Open Day meetings: the first one has shown an interesting exchange of experiences between patients/caregivers and the multidisciplinary team of doctors taking care of NET patients. Based on the positive feedback, similar events will be arranged in other towns.

NET Italy Onlus is fighting on several fronts, but the main target is to continue giving support to patients, train and inform the medical community that usually has no contact with these rare diseases.

For NET Italy, becoming an INCA Member has offered a broader perspective: on one hand, access to global information, on the other, the opportunity to raise local issues with INCA.

Get connected with NET Italy Onlus

 Medical News

Resection of the Primary Tumor Improves Survival in Patients with Gastro-Entero-Pancreatic Neuroendocrine Neoplasms with Liver Metastases: A SEER-based Analysis

GEP‐NEN patients with liver metastases (LM) were selected from the Surveillance, Epidemiology, and End Results database between 2010 and 2015. Resection of the primary tumor was associated with prolonged survival in all patients (5‐year overall survival (OS) rates), and improved 5‐year OS rates were observed in patients with gastric, small intestinal, colorectal, and pancreatic subtypes. The findings from this research may provide meaningful insights for surgeons to identify high‐risk patients. Read the full text here

Call for All Sponsors to Publish Clinical Trial Results in EU Database

The European Commission (EC), the European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) have co-signed a letter reminding all sponsors of clinical trials conducted in the European Union of their obligation to make summaries of results of concluded trials publicly available in EU Clinical Trials Database (EudraCT).

Transparency and public access to clinical trial results, whether positive or negative, are fundamental for the protection and promotion of public health. It assures trial subjects that their voluntary participation in clinical trials is useful and that the results have been collated and reported for the benefit of all. In addition, for those medicines which are placed on the market or used in further clinical trials, it allows patients and healthcare professionals, or any other citizen, to find out more information about medicines they might be taking or prescribing. Transparency also enhances scientific knowledge and helps to advance clinical research and support more efficient medicine development programs.

As of April 2019, the EudraCT database included 57,687 clinical trials in total, out of which 27,093 were completed. Read more here
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