Searchable abstracts of presentations at key conferences in endocrinology

ea0070aep548 | General Endocrinology | ECE2020

Patient perception and views on quality of care for rare endocrine diseases. Results from an EndoERN survey

Webb Susan , Kristensen Jette , Vitali Diana , van Klink Sandra , van Beuzekom Charlotte , Nordenström Anna

Introduction: An aim of the ERNs is empowering patients, by education & learning about their experiences after diagnosis of a rare endocrine disease (RED), to identify gaps and improve outcome. Thus, EndoERN Work Package 4 designed a survey, to learn about patients perceptions on quality of care and existing gaps in diagnosis/management.Aim: Evaluate results of a 21 question survey answered on-line on a Likert scale by individual patients with RED or...

ea0070aep676 | Pituitary and Neuroendocrinology | ECE2020

European Society of Endocrinology audit and multi-country comparison of Adult Growth Hormone Deficiency (AGHD) treatment in clinical practice in Europe and Australia; –how closely are protocols and best practice recommendations followed

Martel-Duguech Luciana , Screen Nik , Jorgensen Jens Otto L , Korbonits Marta , Johannsson Gudmundur , Webb Susan M

Background: Current guidelines recommend that susceptible patients should be tested and treated for AGHD. Still, it is not universally recognised as a distinct entity and reimbursement of GH replacement therapy is not available in some countries.Aim: 1) to record current practice of AGHD management throughout Europe and benchmark it against existing guidelines, 2) to evaluate educational status of health care professionals.Patients...

ea0070ep292 | Pituitary and Neuroendocrinology | ECE2020

Quality of life in patients with Cushing’s syndrome in remission: 10-year follow-up

Santos Alicia , Resmini Eugenia , Martinez Momblan Mª Antonia , Medina Marc , Webb Susan

Introduction: Cushing’s syndrome (CS) has been associated with low quality of life, even after biochemical cure. However little data is available on long term follow-up. The aim of the study was to analyse 10-year follow-up of quality of life (QoL) in patients in remission of CS.Methods: 24 patients in remission of CS followed in Hospital Sant Pau were included in this study (3 men, 21 pituitary origin, 3 adrenal; mean baseline age 45.1 ± 14.1...

ea0022s1.6 | European networks | ECE2010

The European Registry on Cushing's syndrome (ERCUSYN) database: first year experience

Webb Susan , Santos Alicia , Trainer Peter , Strasburger Christian , Lamberts Steven , Wass John , Feelders Richard , Franz Holger

The ERCUSYN (European Registry on Cushing’s syndrome (CS)) study is a project funded by the European Commission Public Health Program (PHP 800200), of which the ESE is one of the 41 Partners from 25 countries. The aims include obtaining prospective and follow-up data at EU level on epidemiology, mortality, outcome of therapies, co-morbidities, assessment of diagnostic and therapeutic strategies, quality of life evaluation using a disease-generated questionnaire (CushingQo...

ea0022p660 | Neuroendocrinology and Pituitary (<emphasis role="italic">Generously supported by Novartis</emphasis>) | ECE2010

Trends in acromegaly treatment in Spain

Sesmilo Gemma , Gaztambide Sonia , Pico Antonio , Soto Alfonso , Torres Elena , Fajardo Carmen , Blanco Concepcion , Webb Susan

The Spanish acromegaly registry (REA) is an online epidemiological database created in 1997 to collect clinical and biochemical data of patients with acromegaly followed in Spain.Aim: To study trends in acromegaly treatment over time in Spain.Methods: REA is an online database in which registered endocrinologists collect data from all acromegalic patients seen at their practices in Spain. In the last year the neuroendocrine group o...

ea0020htc5 | Hot topics: Clinical | ECE2009

ESE Young Investigator Award

Neggers Sebastian , Herder Wouter , Feelders Richard , Badia Xavier , Webb Susan , Lely Aart-Jan

Objective: To assess if weekly administration of 40 mg pegvisomant (PEG-V) improves quality of life (QoL) and metabolic parameters in acromegalic patients with already normal age-adjusted insulin-like growth factor-I (IGF-I) concentrations during long-acting somatostatin analog (SSA) treatment.Design: Prospective investigator-initiated, double blind, placebo controlled, cross-over study. Twenty acromegalic subjects received for two consecutive treatment ...

ea0056p852 | Pituitary - Clinical | ECE2018

Psychopathology in Cushing’s disease and acromegaly

Santos Alicia , Resmini Eugenia , Crespo Iris , Valassi Elena , Martinez Ma Antonia , Webb Susan M

Introduction: Cushing’s disease (CD) and acromegaly, despite their different specific symptoms, often present psychopathology (mainly depression and anxiety) even after hormonal normalization. However, their psychopathological profiles may be different. The aim of this study was to analyse the psychopathological profile in successfully treated Acromegaly and CD, and to compare both diseases. Current hormonal evaluation and time since endocrine control will also be analyse...

ea0063p709 | Pituitary and Neuroendocrinology 2 | ECE2019

Protein expression of convertases involved in POMC processing in silent and functioning corticotroph tumors

Cano David , Garcia-Martinez Araceli , Flores Alvaro , Gil Joan , Puig-Domingo Manel , Webb Susan M , Soto Alfonso , Pico Antonio

Introduction: Previous results of our group, presented in the ECE last year, showed a lower gene expression of proconvertase PC1/3, involved in the processing of POMC, in silent corticotroph tumors (sCT) than in functioning ones (fCT), overall and in microadenomas. The aim of the present study was to quantify the protein expression of convertases involved in the processing of POMC (PC1/3) and in the degradation of ACTH (PC2, CPE and PAM) in a series of CT.</p...

ea0049ep1010 | Pituitary - Clinical | ECE2017

Hypertension, acromegaly and pegvisomant treatment: Experience from ACROSTUDY

Vila Greisa , Jan vanderLely Arrt , Neggers Sebastian , Luger Anton , Webb Susan , Biller Beverly , Jonsson Peter , Hey-Hadavi Judith

Introduction: Hypertension (HTN) is a major cardiovascular (CV) risk factor and independent predictor of the increased mortality in patients with acromegaly. Surgical cure of acromegaly is associated with improvement in blood pressure (BP) levels, however little is known on the effect of pegvisomant (PEGV) treatment on HTN.Methods/design: ACROSTUDY is an open-label, international, prospective, non-interventional study monitoring the long-term safety of P...

ea0037ep64 | Adrenal cortex | ECE2015

Serum brain-derived neurotrophic factor in Cushing's syndrome patients

Santos Alicia , Resmini Eugenia , Barahona Ma Jose , Crespo Iris , Valassi Elena , Martinez Ma Antonia , Marin Ana , Webb Susan M

Introduction: Brain-derived neurotrophic factor (BDNF) is a protein that has been linked to several cardiovascular risk factors and bone status. Stress and corticosteroid exposure can affect BDNF levels, although this has never been studied in Cushing’s syndrome (CS). The aims of this study were to establish if BDNF levels were reduced in CS and to check possible associations to cardiovascular risk factors and bone status.Methods: 52 patients (18 ac...