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INCA Monthly Newsletter - July 2018 News Update
INCA Members' News
INCA Partners' News
Medical News

 INCA Unmet Needs in NETs Initiative Results to be Presented at Key Medical Conferences around the World


Two of the INCA abstracts based on the findings of the Unmet Needs in the Global NET Community Initiative have been accepted for poster presentation:
- "Unmet needs in the global NETs patient community from the perspectives of patients, patient advocates and NET health professionals" - at the upcoming 2018 NANETS Annual Multidisciplinary NET Disease Symposium, October 4-6, in Seattle, Washington, USA
- "Unmet needs in the management of neuroendocrine tumours (NETs): A global survey of patients, patient advocates and healthcare professionals " -  during the ESMO 2018 Congress, 19-23 October, Munich, Germany
Furthermore, the abstract "Unmet needs in the global NETs patient community: an assessment of major gaps from the perspectives of patients, patient advocates and NET health professionals" has been accepted into the APNETS 2018 program as an oral presentation. The INCA President, Simone Leyden, who is also a convenor of the APNETS Conference, will be presenting the findings of the Unmet Needs initiative in Melbourne in the beginning of November.
INCA would like to thank again everyone involved in taking further this important initiative on addressing unmet needs for NET patients. Special thanks to NETRF who kindly funded the development of the surveys, white paper and all visual materials, which will soon be available in 7 languages.

Committed to be the global voice of NET patients, INCA is proudly anticipating to bring its knowledge to the major medical fora. We are looking forward to continue building bridges with our key collaborators in the NET community to collectively address the many challenges in securing a timely diagnosis and accessing optimal treatment and care.

INCA Members' News

AMEND Raises Almost £15,000 During Yorkshire Three Peaks Challenge


On the weekend of 30 June, a 13-strong team climbed three famous English mountains (Pen-y-Ghent, Ingleborough and Whernside) in the stunning scenery of the Yorkshire Dales to raise money for AMEND.  With exceptional weather in England this summer, the team, including several patients, had to deal with temperatures of up to 32 degrees celsius and almost no shade during the 2-day adventure.  Nevertheless, with plenty of sunscreen and fluids, and despite blisters and aching muscles, everyone completed all three peaks successfully, raising the whopping total of almost £15,000.  Profits from the trip will be added to AMEND’s Research Fund, with the aim of awarding grants in 2019.  You can read more about this adventure on the AMEND website.

 CCF’s 50th Anniversary Video Series Continues With “Laughter Is the Best Medicine.”


Steve Mazan has known since he was a kid that he wanted to make people laugh. A diagnosis of neuroendocrine cancer in 2005 made this stand-up comedian and inspirational speaker more determined than ever to realize his dream of being on the David Letterman show. He was told he had 5 years to live; 13 years later he’s a nationwide performer, an Emmy Award winning television writer, an author, and a TED speaker. “It doesn’t matter how much time you have,” says Steve, “it’s what you do with it.”

Watch the video on CCF's Youtube channel, or on Facebook.

CNETS Canada NET Research Priorities Survey Results


In March CNETS Canada reached out to the patient community through an online, anonymous survey to gather feedback and input on setting the research priorities for CNETS Canada sponsored grants for the next 2-3 years.

187 responses from across Canada were received with 75% of the replies from patients. One of the most significant findings was 90% of respondents who have donated to NET research in the past, will continue to support NET cancer research in the future. 75% of respondents indicated the motivating factor for donating to NET research is “hoping for a cure”. When asked where should research funds be directed towards the community priorities were, clinical trials (74%), immunotherapy (50%), PRRT (48%), Ga68 (47%) and basic science (33%).

Based on the positive community feedback, CNETS Canada will launch the 2018 Call for NET Research Grant Applications with the community priorities for NET research as part of the eligibility criteria for applications.

NET Patient Foundation Reports Success in Treatment Availability in UK

For a couple of years now, the UK has struggled with NET treatments being unavailable, due to lack of NHS approval. The NPF is however delighted with the three positive outcomes it has received this month. Patients, healthcare professionals and industry groups have been working so hard to bring us back to a service where we could offer all the treatments a NET patient has the right to receive:

1. Scottish Medicines Consortium (SMC) has approved lutetium 177Lu oxodotreotide for patients in NHS Scotland.
SMC: "We would like to thank the NET Patient Foundation for the time and effort taken to produce your submission. Capturing the views and experiences of patients and carers is an important part of the SMC process and plays a key role in helping our Committee reach its decisions. We hope that your patient group will welcome this decision”.

2. The National Institute for Health Care Excellence (NICE) has recommended Lutetium (177Lu) oxodotreotide, within its marketing authorisation, as an option for treating unresectable or metastatic, progressive, well-differentiated (grade 1 or grade 2), somatostatin receptor-positive gastroenteropancreatic neuroendocrine tumours (NETs) in adults.

3. All Wales Medicines Strategy Group (AWMSG) has recommend Telotristat ethyl as an option for restricted use in NHS Wales to treat carcinoid syndrome diarrhoea in combination with somatostatin analogue (SSA) therapy in adults inadequately controlled by SSA therapy. 
AWMSG: "The information the NET Patient Foundation submitted, on behalf of the NET community, helped the All Wales Medicines Strategy Group to understand how this condition affects patients and carers.”

NETRF Works to Take PRRT to Next Level


The Neuroendocrine Tumor Research Foundation (NETRF) has invested more than $1.5 million in advancing a precision form of radiation therapy for NETs called Peptide Receptor Radionuclide Therapy (PRRT).

Improving efficacy and safety
Three NETRF-funded studies are looking at how existing approaches to PRRT can be improved to:
  • Expand the number of patients able to benefit from PRRT
  • Increase its precision to target even the smallest signs of cancer
  • Reduce the toxicity of current treatments
Innovative approaches
this video, you will meet the researchers who are exploring methods that may improve the benefits of PRRT for more people. Learn what they hope to discover.
PRRT: A promising advancement
PRRT is a promising treatment of neuroendocrine tumors (NETs). Research shows PRRT can help to:
  • Increase survival
  • Improve quality of life
  • Relieve symptoms
  • Decrease tumor size
PRRT is generally well tolerated. Common side-effects are nausea, vomiting, and abdominal pain. Other less common side-effects are bone, liver, and kidney toxicity, and mild hair loss. But not everyone benefits from PRRT. 
Attracting the best and brightest
As the major private funder of NET research, NETRF is able to quickly pursue a promising advance in medicine like PRRT to recruit the most talented experts in the world.
“NETRF harnessed the world’s leading experts in PRRT to help us advance this therapeutic option to increase the benefits and reduce the risks,” said Elyse Gellerman, NETRF Chief Executive Officer.
All research grants are made possible by generous gifts to the NET Research Foundation from patients, families, and friends of those who want to improve options for those affected by NETs.

Unicorn Foundation Successfully Receives Two Grants



The Unicorn Foundation has received two grants recently, $70,000 to support the provision of their Nurse support service and $200,000 to an application to support the CONTROL NETs study.

Here is an update from Principal Investigator, A/Prof Nick Pavlakis:

Great news was received with the award of a $200,000 grant from Tour de Cure to an application by the Unicorn Foundation to support the CONTROL NET study, a study conducted by the Australasian Gastrointestinal Trials Group (AGITG) through the NHMRC Clinical Trials Centre.

Capecitabine ON Temozolomide Radionuclide therapy Octreotate Lutetium-177 NeuroEndocrine Tumours Study 
(Clinical identifier: NCT02358356) is a randomized, controlled, multi-centre parallel group (in midgutNETs and pancreasNETs) phase II open label trial of 72 patients which aims to improve outcomes for patients with advanced midgut or pancreatic NETs by providing high quality evidence, currently lacking, on the relative overall benefits and costs of LuTate (177Lu-Octreotate), the predictive role of PET scans, tissue biomarkers, and patient quality of life.

66 of 72 patients have been enrolled in the study so far, which has completed its accrual of midgut NET patients but requires 6 more patients with Pancreas NETs to complete the study accrual. The Tour De Cure Grant provides funding to enable completion of the main study objectives.

The Unicorn Foundation has been crucial in providing grant funding (close to $600,000) that has enabled this important study to proceed and near its completion.
INCA Partners' News

Novartis Launches the Galaxies of Hope App, a Digital Experience for the Neuroendocrine Tumor (NET) Cancer Community

Novartis launched its Galaxies of Hope app, a unique digital experience created to support the neuroendocrine tumor (NET) community. Galaxies of Hope engages users through the art of visual storytelling, using the actual words and voices of patients, caregivers, and physicians who are part of the NET cancer community. This digital experience is divided into three different "journey" types, one for each of these groups. Users can explore the different galaxies within the journeys to connect with the experiences of patients, caregivers, and physicians involved in the NET patient journey. Galaxies of Hope is now available to download for free on the App Store for iPhone and iPad in the US only.

Novartis believes that raising awareness of NET cancer in creative ways is important in improving understanding and management of this rare disease. Novartis collaborated with Numinous Games, award-winning video game developers, to create Galaxies of Hope. It is a content-rich, poetic, and interactive digital experience which presents a new and unique way for NET cancer patients, caregivers, and physicians to learn more about the emotional course of this disease.

"At Novartis, our vision is to reimagine how we can provide new platforms for patient support. We believe that this app can have a real, positive impact in the NET cancer community," said Ameet Mallik, Executive Vice President and Head, US Oncology at Novartis. "We hope that the creation of this virtual patient journey experience for the NET cancer community will provide support to those living with this rare disease and those who manage and care for them."
Galaxies of Hope will be available in the Google Play Store in the US only in the coming weeks.

Medical  News

Yale Cancer Researchers Suggest New Treatment for Rare Inherited Cance


Studying two rare inherited cancer syndromes, Yale Cancer Center (YCC) scientists have found the cancers are driven by a breakdown in how cells repair their DNA. The discovery, published today in Nature Genetics, suggests a promising strategy for treatment with drugs recently approved for other forms of cancer, said the researchers.

The two conditions — called Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Succinate Dehydrogenase-related Hereditary Paraganglioma and Pheochromocytoma (SDH PGL/PCC) — boost the risk of tumors that may be benign or cancerous. Oncologists aim to remove tumors by surgery, but treatments are largely ineffective if the tumors have become metastatic.

In both inherited cancer syndromes, cells produce abnormally high amounts of metabolites, which are part of the biochemical process that the body uses to turn carbohydrates, fats, and proteins into energy. This is due to inherited defects in the genes that encode for enzymes that normally process these metabolites. The Yale investigators discovered that these high levels of metabolites can degrade a process known as homologous recombination, by which cells mend DNA damage that occurs when they divide.

“Our finding identifies an Achilles heel for these tumors, which potentially can be treated using a new type of medication, called a PARP inhibitor,” said 
Peter Glazer, M.D., Ph.D., chair of the Department of Therapeutic Radiology at YCC, and co-corresponding author on the study.

PARP (poly ADP-ribose polymerase) inhibitors are designed to kill off cancer cells that already have lost some of their ability to repair their DNA via homologous recombination. The inhibitors aim to wipe out DNA repair completely, thus killing the cell. The Food and Drug Administration has approved three such drugs to treat breast, ovarian, and other types of cancers with mutations in BRCA genes that disrupt homologous recombination.

Full article.

EMA Recommends Granting Marketing Authorisations for the First Two CAR T-cell Therapies in the EU

It also recommended an extension to indications for tocilizumab to include the treatment of CAR-T-cell-induced cytokine release syndrome.
On 28 June 2018, the European Medicines Agency’s (EMA’s) Committee for Medicinal Products for Human Use (CHMP) recommended granting marketing authorisations for the first two chimeric antigen receptors (CAR) T-cell therapies in the European Union.  Tisagenlecleucel and  ciloleucel are both advanced therapy medicinal products (ATMPs). Tisagenlecleucel is intended for the treatment of relapsed or refractory acute lymphoblastic leukaemia (ALL) and relapsed or refractory diffuse large B-cell lymphoma (DLBCL), while ciloleucel is intended for treatment of relapsed or refractory DLBCL and relapsed or refractory primary mediastinal B-cell lymphoma (PMBCL). 
Tisagenlecleucel and ciloleucel were designated as orphan medicines during their development. They are also the first medicines supported through EMA’s PRIority Medicines (PRIME) scheme to receive a positive opinion from the CHMP. 
Together with the approval recommendation for the first CAR-T cell therapies, the CHMP also recommended an extension to the therapeutic indication for tocilizumab to include the treatment of CAR-T-cell-induced cytokine release syndrome (CRS), a known serious side effect of CAR-T cell therapies. 

Full article.

From Space to Cancer Survivors, Applying Exercise Research to Protect Health

Many cancer survivors and astronauts have something in common: their bodies can experience years of aging after only a few months of treatment – or space flight. Exercise can help, says Jessica Scott, PhD, a Principal Investigator at Memorial Sloan Kettering Cancer Center. Before focusing on cancer patients, Scott worked at the Johnson Space Center, helping astronauts keep their heart and muscles healthy. In this article by the American Institute for Cancer Research, she talks about the emerging field of exercise-oncology and how applying the research related to astronauts can help survivors prevent or slow accelerated aging.

Full article.

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