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Francesca Marini Department of Experimental and Clinical Biomedical Sciences, University of Florence, Florence, Italy
F.I.R.M.O. Italian Foundation for the Research on Bone Diseases, Florence, Italy

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Francesca Giusti Department of Experimental and Clinical Biomedical Sciences, University of Florence, Florence, Italy

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Teresa Iantomasi Department of Experimental and Clinical Biomedical Sciences, University of Florence, Florence, Italy

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Federica Cioppi University Hospital of Florence, Azienda Ospedaliero Universitaria Careggi (AOUC), Florence, Italy

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Maria Luisa Brandi F.I.R.M.O. Italian Foundation for the Research on Bone Diseases, Florence, Italy

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Patients This retrospective, observational study was performed on a series of MEN1 patients retrieved from the ‘Florentine MEN1 database’ ( 12 ). This clinical database is part of the ‘Italian MEN1 Database’ ( 13 ), which was initially approved by the

Article Type:
Research Article
Collections:
Bone and Mineral Metabolism
DOI:
https://doi.org/10.1530/EC-21-0456
Volume/Issue:
Volume 11: Issue 5
Open access
Xinge Tao Department of Endocrinology and Diabetes, The First Affiliated Hospital of Xiamen University, School of Medicine, Xiamen University, Xiamen, China

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Yanbin Xue Computer Net Center, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Rui Niu Department of Endocrinology and Diabetes, The First Affiliated Hospital of Xiamen University, School of Medicine, Xiamen University, Xiamen, China

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Wenjing Lu Department of Endocrinology and Diabetes, The First Affiliated Hospital of Xiamen University, School of Medicine, Xiamen University, Xiamen, China

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Huayan Yao Computer Net Center, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Chunmei He Department of Endocrinology and Diabetes, The First Affiliated Hospital of Xiamen University, School of Medicine, Xiamen University, Xiamen, China

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Bin Cui Department of Endocrine and Metabolic Diseases, Shanghai Institute of Endocrine and Metabolic Diseases, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Changqin Liu Department of Endocrinology and Diabetes, The First Affiliated Hospital of Xiamen University, School of Medicine, Xiamen University, Xiamen, China
Xiamen Key Laboratory for Clinical Efficacy and Evidence-Based Research of Traditional Chinese Medicine, the First Affiliated Hospital of Xiamen University, School of Medicine, Xiamen University, Xiamen, China
Fujian Province Key Laboratory of Diabetes Translational Medicine, The First Affiliated Hospital of Xiamen University, School of medicine, Xiamen University, Xiamen, China

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hospitals and then to long-term follow-up at primary or secondary hospitals in the community. In Shanghai, we built a corresponding database based on the Shanghai Hospital Link Project to get the real-world knowledge of T2DM patients and provide better

Article Type:
Research Article
Collections:
Metabolic Syndrome and Diabetes
DOI:
https://doi.org/10.1530/EC-23-0474
Volume/Issue:
Volume 13: Issue 2
Open access
S R Ali Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK

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J Bryce Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK

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A L Priego-Zurita Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands

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M Cherenko Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands

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C Smythe Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK

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T M de Rooij Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands

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M Cools Department of Internal Medicine and Paediatrics, Ghent University, Belgium
Department of Paediatric Endocrinology, Ghent University Hospital, Ghent, Belgium

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T Danne Diabetes Center AUF DER BULT, Hannover, Germany

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H Katugampola UCL GOS Institute of Child Health, London

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O M Dekkers Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands
Department of Medicine & Clinical Epidemiology, Leiden University Medical Centre, Leiden, the Netherlands

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O Hiort Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany

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A Linglart AP-HP, Université Paris Saclay, INSERM, Bicêtre Paris Saclay Hospital, le Kremlin Bicêtre, France

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I Netchine Sorbonne Université, Inserm, Centre de recherche Sainte Antoine, APHP, Hôpital des Enfants Armand Trousseau, Paris, France

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A Nordenstrom Pediatric Endocrinology, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden

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P Attila Clinical Genetics and Endocrinology Laboratory, Department of Laboratory Medicine, Semmelweis University, Budapest, Hungary

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L Persani Department of Endocrine and Metabolic Diseases, Istituto Auxologico Italiano IRCCS, Milan, Italy
Department of Medical Biotechnology and Translational Medicine, University of Milan, Milan, Italy

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N Reisch Endokrinologie, Medizinische Klinik Innenstadt und Poliklinik IV, Klinikum der Universität München, Munich, Germany

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A Smyth Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK

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Z Sumnik Department of Pediatrics, Motol University Hospital and 2nd Faculty of Medicine, Charles University, Prague, Czech Republic

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D Taruscio National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy

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W E Visser Erasmus Medical Centre, Department of Internal Medicine, Academic Centre for Thyroid Diseases, Rotterdam, the Netherlands

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A M Pereira Department of Endocrinology and Metabolism, Amsterdam University Medical Centres, University of Amsterdam, Amsterdam, the Netherlands
Amsterdam Gastroenterology Endocrinology and Metabolism, Amsterdam, the Netherlands

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N M Appelman-Dijkstra Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands

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S F Ahmed Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK
Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK
Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, the Netherlands

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Objective

The European Registries for Rare Endocrine Conditions (EuRRECa, eurreb.eu) includes an e-reporting registry (e-REC) used to perform surveillance of conditions within the European Reference Network (ERN) for rare endocrine conditions (Endo-ERN). The aim of this study was to report the experience of e-REC over the 3.5 years since its launch in 2018.

Methods

Electronic reporting capturing new encounters of Endo-ERN conditions was performed monthly through a bespoke platform by clinicians registered to participate in e-REC from July 2018 to December 2021.

Results

The number of centres reporting on e-REC increased to a total of 61 centres from 22 countries. A median of 29 (range 11, 45) paediatric and 32 (14, 51) adult centres had reported cases monthly. A total of 9715 and 4243 new cases were reported in adults (age ≥18 years) and children, respectively. In children, sex development conditions comprised 40% of all reported conditions and transgender cases were most frequently reported, comprising 58% of sex development conditions. The median number of sex development cases reported per centre per month was 0.6 (0, 38). Amongst adults, pituitary conditions comprised 44% of reported conditions and pituitary adenomas (69% of cases) were most commonly reported. The median number of pituitary cases reported per centre per month was 4 (0.4, 33).

Conclusions

e-REC has gained increasing acceptability over the last 3.5 years for capturing brief information on new encounters of rare conditions and shows wide variations in the rate of presentation of these conditions to centres within a reference network.

Significance statement

Endocrinology includes a very wide range of rare conditions and their occurrence is often difficult to measure. By using an electronic platform that allowed monthly reporting of new clinical encounters of several rare endocrine conditions within a defined network that consisted of several reference centres in Europe, the EuRRECa project shows that a programme of e-surveillance is feasible and acceptable. The data that have been collected by the e-reporting of rare endocrine conditions (e-REC) can allow the continuous monitoring of rare conditions and may be used for clinical benchmarking, designing new studies or recruiting to clinical trials.

Article Type:
Research Article
Collections:
Pituitary and Hypothalamus
DOI:
https://doi.org/10.1530/EC-23-0434
Volume/Issue:
Volume 12: Issue 12
Open access
Zeming Liu Department of Plastic Surgery, Zhongnan Hospital of Wuhan University, Wuhan, China

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Di Hu Department of Plastic Surgery, Zhongnan Hospital of Wuhan University, Wuhan, China

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Yihui Huang Department of Plastic Surgery, Zhongnan Hospital of Wuhan University, Wuhan, China

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Sichao Chen Department of Plastic Surgery, Zhongnan Hospital of Wuhan University, Wuhan, China

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Wen Zeng Department of Ophthalmology, Zhongnan Hospital of Wuhan University, Wuhan, China

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Ling Zhou Department of Plastic Surgery, Zhongnan Hospital of Wuhan University, Wuhan, China

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Wei Zhou Department of Plastic Surgery, Zhongnan Hospital of Wuhan University, Wuhan, China

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Min Wang Department of Plastic Surgery, Zhongnan Hospital of Wuhan University, Wuhan, China

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Haifeng Feng Department of Plastic Surgery, Zhongnan Hospital of Wuhan University, Wuhan, China

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Wei Wei Department of Pediatrics, St John Hospital and Medical Center, Detroit, Michigan, USA

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Chao Zhang Department of Cardiovascular Surgery, Union Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China

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Danyang Chen Department of Plastic Surgery, Zhongnan Hospital of Wuhan University, Wuhan, China

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Liang Guo Department of Plastic Surgery, Zhongnan Hospital of Wuhan University, Wuhan, China

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management of pediatric patients with suspected and known distant metastases. Materials and methods SEER database and eligible study population The data for the present study was derived from the SEER Program (SEER 18) of the National Cancer

Article Type:
Research Article
DOI:
https://doi.org/10.1530/EC-18-0441
Volume/Issue:
Volume 8: Issue 2
Open access
Daniel Alexander Hescheler Department of Nuclear Medicine, University Hospital Münster, Münster, Germany
European Institute for Molecular Imaging (EIMI), University of Münster, Münster, Germany

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Milan Janis Michael Hartmann Department of General, Visceral, Tumor and Transplant Surgery, University Hospital Cologne, Cologne, Germany

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Burkhard Riemann Department of Nuclear Medicine, University Hospital Münster, Münster, Germany

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Maximilian Michel Institute of Zoology, University of Cologne Germany, Cologne, Germany

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Christiane Josephine Bruns Department of General, Visceral, Tumor and Transplant Surgery, University Hospital Cologne, Cologne, Germany

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Hakan Alakus Department of General, Visceral, Tumor and Transplant Surgery, University Hospital Cologne, Cologne, Germany

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Costanza Chiapponi Department of General, Visceral, Tumor and Transplant Surgery, University Hospital Cologne, Cologne, Germany

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data were obtained from open access databases and referenced accordingly. The study was conducted in accordance with the provisions of the Declaration of Helsinki and local laws, as previously described ( 6 ). Genetic alterations in anaplastic

Article Type:
Research Article
Collections:
Hormones and Cancer
DOI:
https://doi.org/10.1530/EC-21-0624
Volume/Issue:
Volume 11: Issue 4
Open access
Dong Cen Key Laboratory of Laparoscopic Technology of Zhejiang Province, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China
Department of General Surgery, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China

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Hui Liu Key Laboratory of Laparoscopic Technology of Zhejiang Province, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China

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Zhe Wan Key Laboratory of Laparoscopic Technology of Zhejiang Province, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China
Department of General Surgery, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China

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Zhongjie Lin Key Laboratory of Laparoscopic Technology of Zhejiang Province, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China
Department of General Surgery, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China

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Yanting Wang Department of Internal Medicine, John H Stroger Hospital of Cook County, Chicago, Illinois, USA

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Junjie Xu Key Laboratory of Laparoscopic Technology of Zhejiang Province, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China
Department of General Surgery, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China

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Yuelong Liang Key Laboratory of Laparoscopic Technology of Zhejiang Province, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China
Department of General Surgery, Sir Run-Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou, China

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prevalence of NEN are steadily increasing ( 1 , 2 ). According to the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) database, the incidence rate of NEN has increased from 1.09 per 100,000 people in 1973 to 6.98 per 100

Article Type:
Research Article
DOI:
https://doi.org/10.1530/EC-19-0124
Volume/Issue:
Volume 8: Issue 9
Open access
Wenhao Lin Department of Urology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Jun Dai Department of Urology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Jialing Xie Department of Pathology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Jiacheng Liu Department of Urology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Fukang Sun Department of Urology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Xin Huang Department of Urology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Wei He Department of Urology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Chen Fang Department of Urology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Juping Zhao Department of Urology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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Danfeng Xu Department of Urology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China

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, which were developed from the Surveillance, Epidemiology, and End Results (SEER) database comprising more than 1000 ACC patients, have shown promising predictive accuracy in American patients ( 5 , 7 , 8 ). Recently, a scoring system known as the S

Article Type:
Research Article
Collections:
Adrenal
DOI:
https://doi.org/10.1530/EC-22-0114
Volume/Issue:
Volume 11: Issue 6
Open access
Wafaa M Rashed Research Department, Children’s Cancer Hospital Egypt (CCHE-57357), Cairo, Egypt
Armed Forces College of Medicine, Cairo, Egypt

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Anas Saad Faculty of Medicine, Damascus University, Damascus, Syria

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Muneer Al-Husseini Faculty of Medicine, Ain Shams University, Cairo, Egypt

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Ahmed Mahmoud Galal Armed Forces College of Medicine, Cairo, Egypt

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Assem Mohamed Ismael Armed Forces College of Medicine, Cairo, Egypt

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Ahmed M Al-Tayep Armed Forces College of Medicine, Cairo, Egypt

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Ayman El Shafie Armed Forces College of Medicine, Cairo, Egypt

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Mahmoud Ahmed Ali Armed Forces College of Medicine, Cairo, Egypt

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Ahmad Samir Alfaar Charité – Universitätsmedizin Berlin, Campus Virchow Klinikum, Ophthalmology Department, Berlin, Germany

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second malignant neoplasm (SMN) ( 4 ). We aim to report the incidence of the adrenal gland malignancies as a second primary malignancy based on the Surveillance, Epidemiology, and End Results ‘SEER’ database. Patients and methods We obtained data

Article Type:
Research Article
DOI:
https://doi.org/10.1530/EC-18-0304
Volume/Issue:
Volume 7: Issue 10
Open access
Sofya Gronskaia Endocrinology Research Centre, Moscow, Russia

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Galina Melnichenko Endocrinology Research Centre, Moscow, Russia

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Liudmila Rozhinskaya Endocrinology Research Centre, Moscow, Russia

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Tatiana Grebennikova Endocrinology Research Centre, Moscow, Russia

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Elizaveta Mamedova Endocrinology Research Centre, Moscow, Russia

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Ekaterina Pigarova Endocrinology Research Centre, Moscow, Russia

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Elena Przhialkovskaya Endocrinology Research Centre, Moscow, Russia

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Larisa Dzeranova Endocrinology Research Centre, Moscow, Russia

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Ivan Dedov Endocrinology Research Centre, Moscow, Russia

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Valentin Fadeyev I.M. Sechenov First Moscow State Medical University, Moscow, Russia

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Maria Luisa Brandi University of Florence, Surgery and Translational Medicine, Piereccaini, Firenze, Italy

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Zhanna Belaya Endocrinology Research Centre, Moscow, Russia

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, biochemical parameters, bone status, complications and hospital management of hypoparathyroidism among Russian adult referral patients. Methods This study adopted the design of the Italian hypoparathyroidism registry database (University of Florence

Article Type:
Research Article
DOI:
https://doi.org/10.1530/EC-20-0219
Volume/Issue:
Volume 9: Issue 7
Open access
Dirk-Jan van Beek Department of Endocrine Surgical Oncology, University Medical Center Utrecht, Utrecht, The Netherlands

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Rachel S van Leeuwaarde Department of Endocrine Oncology, University Medical Center Utrecht, Utrecht, The Netherlands

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Carolina R C Pieterman Department of Endocrine Oncology, University Medical Center Utrecht, Utrecht, The Netherlands

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Menno R Vriens Department of Endocrine Surgical Oncology, University Medical Center Utrecht, Utrecht, The Netherlands

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Gerlof D Valk Department of Endocrine Oncology, University Medical Center Utrecht, Utrecht, The Netherlands
Parelsnoer Institute, Utrecht, The Netherlands

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the DutchMEN Study Group
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by indication ( 8 , 9 ). Confronted by the principles of evidence-based medicine and need for high-quality scientific evidence regarding follow-up and interventions in MEN1, in the Netherlands in 2007, a retrospective MEN1 database was carefully

Article Type:
Review Article
DOI:
https://doi.org/10.1530/EC-18-0359
Volume/Issue:
Volume 7: Issue 11
Open access