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Tag: research

amendedit
UK Research Registry Now Collecting Data for MEN1 and pNETs

UK National Research Registry for MEN1 and pancreatic neuroendocrine tumours (pNETs) is now collecting patient data. Patients can sign up to AMEND's specific mailing list here in order to receive more information shortly about how to notify their specialists to get involved.

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amendkids
AMEND Marks its 15th Anniversary

2018 marks the 15th year of AMEND’s work to provide information resources and support services to families affected by multiple endocrine neoplasia and associated tumours and disorders. Therefore there is plenty going on this year, such a few highlights: · AMEND members will be taking part in 2 major surveys. The European Multiple Endocrine Neoplasia…

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NET Research Foundation USA
NETRF-funded researchers exploring the birth of a carcinoid cancer cell

Much about a carcinoid cancer cell remains a mystery. For that reason, NETRF funds research to understand how and why a neuroendocrine cancer cell comes to be. Two Harvard researchers are teaming up to explore important longstanding mysteries. 2017 NETRF Accelerator Award grantees, Qiao (Joe) Zhou, PhD, Harvard University, and Ramesh Shivdasani, MD, PhD, Harvard…

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NET Patient Foundation, NET Cancer Day
On NET Cancer Day 2017, NET Patient Foundation published a new report on improving outcomes for patients with NETs in Scotland

On the World NET Cancer Day 2017, the NET Patient Foundation publishes a new report focused on improving outcomes for patients with NETs in Scotland. This follows the success of our Chapter Ten report last year, which made recommendations for inclusion in the Cancer Task Force National Strategy for England to improve outcomes for rare…

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NET patient survey, Oceania
Patient-reported experience of the impact and burden of neuroendocrine tumors: Oceania patient results from a large global survey

This new large survey, published in Asia-Pacific Journal of Clinical Oncology in the beginning of November 2017, was a self-reported global survey regarding NET knowledge/awareness, disease impact/management, interaction with medical teams, and desired improvements. One hundred thirty-eight patients (7% of the global study) in the Oceania region answered closed-ended questions using graded descriptors on their…

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CNETS Canada research grants
CNETS Canada announces 2017 NET Research Grant recipients

The CNETS Canada Neuroendocrine Tumour Research Grant provides each calendar year grant-in-aid for two projects up to a maximum of $40,000 per project. 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 2017 NET…

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NETRF
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…

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inca header NET Pat UK
NET Patient Foundation-UK Data Project 2017

Due to a lack of ICD-10 codes for neuroendocrine cancers, it has been difficult for NET Patient Foundation – UK, INCA member organization, to extract data about NET patients from the NHS cancer registry. It is crucial that we are able to obtain data about NET cancers from the cancer registry in order to be…

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AMEND UK
Free booklet on issues of employment and returning to work with MEN from AMEND-UK

In a 2016 AMEND-UK, INCA member organization, made a member survey where just over half of people told that their work or career had been impacted in a negative way as a direct result of having multiple endocrine neoplasia, or a related condition. In May 2017 AMEND published a new booklet “Employment & Returning to Work”…

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inca header Unicorn project
Unicorn Foundation invites NET patients to participate in Defining NETs research

It’s been nearly twelve months since the “Defining NETs” research project of Unicorn Foundation - Australia, INCA member organization, started and while some valuable data has been collected so far, it is still behind the anticipated targets in recruitment. So far patients from Peter Mac, Royal North Shore and Lyell McEwin Hospital are assisting with…

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