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S C Clement, W E Visser, C A Lebbink, D Albano, H L Claahsen-van der Grinten, A Czarniecka, R P Dias, M P Dierselhuis, I Dzivite-Krisane, R Elisei, A Garcia-Burillo, L Izatt, C Kanaka-Gantenbein, H Krude, L Lamartina, K Lorenz, M Luster, R Navardauskaitė, M Negre Busó, K Newbold, R P Peeters, G Pellegriti, A Piccardo, A L Priego, A Redlich, L de Sanctis, M Sobrinho-Simões, A S P van Trotsenburg, F A Verburg, M Vriens, T P Links, S F Ahmed, and H M van Santen

European network was started (initiative: T.P. Links). 2017: Dekker et al. conducted a survey on the care for pediatric DTC in different European countries and concluded that national registries for pediatric DTC are limited, and treatment is very

Open access

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

Amir H Zamanipoor Najafabadi, Merel van der Meulen, Ana Luisa Priego Zurita, S Faisal Ahmed, Wouter R van Furth, Evangelia Charmandari, Olaf Hiort, Alberto M Pereira, Mehul Dattani, Diana Vitali, Johan P de Graaf, and Nienke R Biermasz

-border collaboration is needed in the form of expert (virtual) consultation for rare and complex cases and in the form of registries to collect high-quality data. This might especially hold true for ultra-rare cases for which even expert centers lack extensive

Open access

Wolfgang Högler, Agnès Linglart, Anna Petryk, Priya S Kishnani, Lothar Seefried, Shona Fang, Cheryl Rockman-Greenberg, Keiichi Ozono, Kathryn Dahir, and Gabriel Ángel Martos-Moreno

HPP may have below-average height but normal weight when compared with the general population ( 3 ). Recent evidence from the Global HPP Registry, a multinational, longitudinal study of patients with HPP, showed that bone deformity, failure to thrive

Open access

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

Open access

Heike Hoyer-Kuhn, Angela Huebner, Anette 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

were described in a large cohort of children with CAH from the AQUAPE CAH registry ( 4 ). Treatment in classic CAH is necessary to compensate for glucocorticoid and mineralocorticoid deficiencies and also to blunt the ACTH secretion, the major driver

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, 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

Open access

Clemens Kamrath, Alexander Eckert, Birgit Rami-Merhar, Sebastian Kummer, Martin Wabitsch, Katharina Laubner, Florian Kopp, Silvia Müther, Steffen Mühldorfer, and Reinhard W Holl

series. The aim of this study was to evaluate frequency, diabetes care, and outcome of patients with LD and insulin receptoropathies in the large multicenter DPV Registry. Patients and methods Data source and study population The current

Open access

Elena V Varlamov, Dan Alexandru Niculescu, Swechya Banskota, Simona Andreea Galoiu, Catalina Poiana, and Maria Fleseriu

number and statistical accuracy by aggregating data from national or international acromegaly data registries ( 5 , 12 , 16 ). Although the importance of these studies is without question, some have uncovered significant differences between countries