Abstract Library

#4341 Genetic factors associated with thymic tumours in patients with MEN1: A nested case-control study in the GTE/AFCE cohort of patients with MEN1

Introduction: Multiple endocrine neoplasia type 1 (MEN1) is a rare autosomal dominant syndrome due to mutations inactivating the MEN1 gene. It is characterised by the development of tumours in various endocrine tissues. One of the major difficulties in its management is its largely unpredictable course, particularly as regards to the development of thymic tumours, which prognosis remains poor.

Conference:

Presenting Author: Journé A

Authors: Journé A, Goudet P, Sow A, Daniel S, Costa A,

Keywords: thymic tumour, risk factor, Multiple endocrine neoplasia type 1,

#3485 Small Bowel NET – Is it better to be diagnosed after long-term symptoms or acutely?

Introduction: NET patients present in many different ways and those with small bowel NET can have a particularly difficult journey to diagnosis. If this leads to a delayed diagnosis, does this also mean poorer survival and outcomes compared to those who present in another manner?

Conference:

Presenting Author:

Authors: Coldham C, Humphries S, Shah T,

Keywords: small bowel NET presentation, small bowel NET outcome,

#2789 The Patient Journey – Experience from Symptoms to Diagnosis among Patients with Small Intestinal Neuroendocrine Tumours (SINET)

Introduction: Patients with SINET often have diffuse symptoms delaying diagnosis. In a patient survey it was observed that 1/3 of NET patients had a time span to diagnosis of > 5 years, with a median of 52 months. Here we assess the patients’ experience during that time period.

Conference: 17th Annual ENETSConcerence (2020)

Presenting Author: Holgersson K

Authors: Holgersson K, Ståhl E, Nilsson M, Grauers B, Mårtensson-Djäken E,

Keywords: SINET, patients' experience, interview,

#2263 Patient Survey Devoted to Characterizing Experience and Expectations of Patients with Neuroendocrine Tumors (NET)

Introduction: Patients (pts) with NET experience consequences of disease progression and treatments; their preferences can influence the choice and success of therapeutic strategies.

Conference: 15th Annual ENETSConcerence (2018)

Presenting Author: SARABI M

Authors: Sarabi M, Gueguen D, Walter T, Hentic O, Baudin E,

Keywords: Patient Report Outcomes, Neuroendocrine Tumor, Quality of life,

#1342 To Evaluate Patient’s Understand of the Neuroendocrine (NET) Multidisciplinary Team (MDT) Meeting Process at a ENETs Centre of Excellence

Introduction: Multidisciplinary teams serve to streamline the patient journey by developing individual treatment plans that are based on ‘best practice'. National and local guidelines govern the MDT process. There is little focus on the patient’s understanding and expectations of how and when the MDT recommendations are communicated.

Conference: 13th Annual ENETSConcerence (2016)

Presenting Author: Rigby C

Authors: Rigby c,

Keywords: Patient MDT ,