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Endocrine Abstracts (2017) 49 EP746 | DOI: 10.1530/endoabs.49.EP746

NET Patient Foundation, Leamington Spa, UK.


Endocrine tumours are a heterogenous group of tumours, that are frequently described as “complex”, “diverse”and, with few exceptions, “rare”. According to the Giwice Position Statement (as issued by the European Task Group for Endocrine Tumours): Endocrine Tumours are defined…as malignant tumours arising from endocrine organs including thyroid, adrenal, parathyroid, as well as neuroendocrine tumours in general. The research supported recommendation, to improve care, experience and outcomes, is for patient-centric endocrine cancer care in specialist centres, by multidisciplinary teams (Box: MDT members), with access to enrolment into clinical and translational research. Specialism being determined by patient volume (geographical prevalence and incidence) and centre/MDT experience in disease subtype. The Taskforce points to the ENETs Centre of Excellence Programme as an exemplar of specialist accreditation. Neuroendocrine neoplasms (NENs) can be found in endocrine glands and more diffusely throughout the body, including respiratory, digestive and urinary tracts, breast, skin and nerve structures. They display a variety of functional and infiltrative behaviours, and growth patterns. Nomenclature varies but in general is based on site of origin, grading (utilising morphology and proliferation), functionality then staging – though determining malignancy for some types is based predominantly on the presence / absence of metastases. The global incidence of NENs is rising. However despite expert recommendations and European guidelines, NET Patient experience reports suggest ongoing care deficits related, amongst other issues, difficulty in accessing clinically appropriate diagnostics, treatment and psychosocial care, including information and support.

1. http://www.endocrinecancer.eu/en/pages/statement

2. http://jgo.ascopubs.org/content/early/2016/06/03/JGO.2015.002980.full

3. http://www.netpatientfoundation.org/2016/10/npf-patient-experience-survey/

Volume 49

19th European Congress of Endocrinology

Lisbon, Portugal
20 May 2017 - 23 May 2017

European Society of Endocrinology 

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