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Samira M Sadowski, Emanuel Christ, Benoit Bédat, Attila Kollár, Wolfram Karenovics, Aurel Perren, Frédéric Triponez and on behalf of the SwissNET registry

therapy are not standard of care. SwissNET is a prospective ongoing nationwide registry of patients with NET of all organs. Its goal is to collect data from NET cases in order to provide quality assessments, to advance knowledge and to establish standard

Open access

Cristina Lamas, Elena Navarro, Anna Casterás, Paloma Portillo, Victoria Alcázar, María Calatayud, Cristina Álvarez-Escolá, Julia Sastre, Evangelina Boix, Lluis Forga, Almudena Vicente, Josep Oriola, Jordi Mesa and Nuria Valdés

the REGMEN (the Spanish Registry of Multiple Endocrine Neoplasia, Pheochromocytmas and Paragangliomas (PPGL)). Patients and methods The REGMEN is a collaborative and multicentric project designed by the Spanish Group for the Study of MEN and

Open access

Jung Soo Lim, Seung-Eun Lee, Jung Hee Kim and Jae Hyeon Kim

Purpose: To evaluate the clinical characteristics and prognostic factors in patients with adrenocortical carcinoma (ACC) in South Korea.

Methods: A nationwide, registry-based survey was conducted to identify pathologically proven ACC at 25 tertiary care centers in South Korea between 2000 and 2014. Cox proportional hazard model and log-rank test were adopted for survival analysis.

Results: Two hundred four patients with ACC were identified, with a median follow-up duration of 20 months (IQR 5-52 months). The median age at diagnosis was 51.5 years (IQR 40-65.8 years), and ACC was prevalent in women (n=110, 53.9%). Abnormal pain was the most common clinical symptom (n=70, 40.2%), and ENSAT stage 2 was most common (n=62, 30.4%) at the time of diagnosis. One hundred sixty-nine patients underwent operation, while 17 were treated with other modalities. The remission rate was 48%, and median recurrence-free survival time was 46 months. Estimated 5-year recurrence-free rate was 44.7%. There were more women, large tumor, atypical mitosis, venous invasion, and higher mitotic count in cancer recurrence group. Estimated 5-year overall survival and disease-specific survival rates were 64.5% and 70.6%, respectively. Higher ENSAT stage and advanced pathologic characteristics were risk factors for all-cause mortality of ACC. Large tumor size and cortisol-secreting tumor were additional risk factors for ACC-specific death.

Conclusions: We report the first epidemiologic study regarding ACC in an Asian population. ENSAT stage 4; lymph node involvement; non-operative group; and invasion of vein, sinusoid, or capsule were associated with an increased risk for all-cause mortality.

Open access

Anne M Drewes, Maria E Møller, Rasmus Hertzum-Larsen, Gerda Engholm and Hans H Storm

). Materials and methods This study is a retrospective follow-up study based on pseudonyminised data from the Danish Cancer Registry. Therefore according to Danish law, neither approval from an ethical committee nor consent from patients was required. In

Open access

Jakob Kirkegård, Dora Körmendiné Farkas, Jens Otto Lunde Jørgensen and Deirdre P Cronin-Fenton

November 30, 2013. Individual-level data linkage of Danish medical registries was possible using the civil registration number, a unique identification number assigned to all Danish residents at birth or immigration ( 8 ). Study population From the

Open access

Wafaa M Rashed, Anas Saad, Muneer Al-Husseini, Ahmed Mahmoud Galal, Assem Mohamed Ismael, Ahmed M Al-Tayep, Ayman El Shafie, Mahmoud Ahmed Ali and Ahmad Samir Alfaar

from the Surveillance, Epidemiology, and End Results (SEER) program of the US National Cancer Institute, using the SEER*stat software (version 8.3.2). We used the SEER 13 Registries Research Data from 1992 to 2013. These registries cover approximately

Open access

Simon Chang, Christian Fynbo Christiansen, Anders Bojesen, Svend Juul, Anna-Marie B Münster and Claus H Gravholt

diagnoses, medication use, and clinical biochemistry from national registries. Our aim was to describe rates of thrombosis and thrombotic risk factors and, for the first time in KS using a national prescription registry, provide an epidemiological assessment

Open access

Marcus Quinkler, Bertil Ekman, Claudio Marelli, Sharif Uddin, Pierre Zelissen, Robert D Murray and on behalf of the EU-AIR Investigators

European Adrenal Insufficiency Registry (EU-AIR), we investigated relative differences in cardiovascular risk factors in patients with AI receiving hydrocortisone and prednisolone as hormone replacement therapy. Methods Study design EU-AIR is an

Open access

Jes Sloth Mathiesen, Jens Peter Kroustrup, Peter Vestergaard, Kirstine Stochholm, Per Løgstrup Poulsen, Åse Krogh Rasmussen, Ulla Feldt-Rasmussen, Sten Schytte, Stefano Christian Londero, Henrik Baymler Pedersen, Christoffer Holst Hahn, Bjarki Ditlev Djurhuus, Jens Bentzen, Sören Möller, Mette Gaustadnes, Maria Rossing, Finn Cilius Nielsen, Kim Brixen, Anja Lisbeth Frederiksen, Christian Godballe and the Danish Thyroid Cancer Group (DATHYRCA)

classified as SMTC and 113 as HMTC. Five were left unclassified. An MTC cohort, initially comprising 476 patients diagnosed with MTC in Denmark between January 1960 and December 2014, was constructed through three nationwide registries: the Danish Thyroid

Open access

Yuan Fang, Xuehong Zhang, Huilin Xu, Stephanie A Smith-Warner, Dongli Xu, Hong Fang and Wang Hong Xu

Registry and the Shanghai Vital Statistics using a unique identification card number ( 15 ). We evaluated the top ten common specific cancers defined based on the International Classification Diseases codes (ICD-10), namely, Stomach (C16), Colon (C18