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
Samira M Sadowski, Emanuel Christ, Benoit Bédat, Attila Kollár, Wolfram Karenovics, Aurel Perren, Frédéric Triponez, and on behalf of the SwissNET registry
Sofya Gronskaia, Galina Melnichenko, Liudmila Rozhinskaya, Tatiana Grebennikova, Elizaveta Mamedova, Ekaterina Pigarova, Elena Przhialkovskaya, Larisa Dzeranova, Ivan Dedov, Valentin Fadeyev, Maria Luisa Brandi, and Zhanna Belaya
epidemiological information regarding chronic hypoparathyroidism, particularly among the Russian population, we initiated an observational registry study of chronic hypoparathyroidism. This study aimed to evaluate the etiological structure, demographics
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
Jung Soo Lim, Seung-Eun Lee, Jung Hee Kim, Jae Hyeon Kim, and The Korean Adrenal Gland and Endocrine Hypertension Study Group, Korean Endocrine Society
some limitations as well. First, because it was a retrospective registry-based study, there were missing data of several clinical variables. Multivariable Cox-proportional hazard models for disease outcome were not constructed due to this shortage
Heike Hoyer-Kuhn, Angela Huebner, Annette Richter-Unruh, Markus Bettendorf, Tilman Rohrer, Klaus Kapelari, Stefan Riedl, Klaus Mohnike, Helmuth-Günther Dörr, Friedrich-Wilhelm Roehl, Katharina Fink, Reinhard W Holl, and Joachim Woelfle
Objective: Treatment in classic congenital adrenal hyperplasia (CAH) is necessary to compensate for glucocorticoid/mineralocorticoid deficiencies and to suppress androgen excess. Hydrocortisone (HC) is preferred in growing children with classic CAH, but recommendations regarding dosage/administration are inconsistent. Aim of the study was to evaluate HC dosing in children with CAH in relation to chronological age, sex, and phenotype based on a multicentre CAH registry.
Design: The CAH registry was initiated in 1997 by the AQUAPE in Germany. On December 31st 2018, data from 1571 patients were included.
Methods: A custom-made electronic health record software is used at the participating centres. Pseudonymized data are transferred for central analysis. Parameters were selected based on current guidelines. Descriptive analyses and linear regression models were implemented with SAS 9.4.
Results: We identified 1288 patients on exclusive treatment with hydrocortisone three times daily (604 boys; median age 7.2 years; 817 salt-wasting phenotype, 471 simple-virilizing phenotype). The mean [lower-upper quartiles] daily HC dose [mg/m² body surface area] was 19.4 [18.9-19.8] for patients <3 months (n=329), 15.0 [14.6-15.3] age ≥3-12 months (n=463), 14.0 [13.7-14.3] age 1-5.9 years (n=745), 14.2 [14.0-14.5] age 6 years-puberty entry (n=669), and 14.9 [14.6-15.2] during puberty-18 years (n=801). Fludrocortisone was administered in 74.1% of patients (median daily dosage 88.8 µg).
Conclusion: Our analyses demonstrated still a high proportion of children with HC doses higher than recommended. This evaluation provides comprehensive information on nationwide hydrocortisone substitution dosages in children with CAH underlining the benefit of systematic data within a registry to assess daily practice.
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
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
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
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
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