- Autor
-
Pracoviště
AP HP Université Paris Saclay INSERM ... 1 Amsterdam Gastroenterology Endocrinol... 1 Clinical Genetics and Endocrinology L... 1 Department of Endocrine and Metabolic... 1 Department of Endocrinology and Metab... 1 Department of Internal Medicine and P... 1 Department of Medical Biotechnology a... 1 Department of Medicine Division of En... 1 Department of Medicine and Clinical E... 1 Department of Paediatric Endocrinolog... 1 Department of Pediatrics Motol Univer... 1 Developmental Endocrinology Research ... 1 Diabetes Center AUF DER BULT Hannover... 1 Division of Paediatric Endocrinology ... 1 Endokrinologie Medizinische Klinik In... 1 Erasmus Medical Centre Department of ... 1 National Centre for Rare Diseases Ist... 1 Office for Rare Conditions Royal Hosp... 1 Pediatric Endocrinology Karolinska In... 1 Sorbonne Université Inserm Centre de ... 1
- Formát
- Publikační typ
- Kategorie
- Jazyk
- Země
- Časopis/zdroj
- Dostupnost
- Vlastník
- Autor
-
Pracoviště
AP HP Université Paris Saclay INSERM ... 1 Amsterdam Gastroenterology Endocrinol... 1 Clinical Genetics and Endocrinology L... 1 Department of Endocrine and Metabolic... 1 Department of Endocrinology and Metab... 1 Department of Internal Medicine and P... 1 Department of Medical Biotechnology a... 1 Department of Medicine Division of En... 1 Department of Medicine and Clinical E... 1 Department of Paediatric Endocrinolog... 1 Department of Pediatrics Motol Univer... 1 Developmental Endocrinology Research ... 1 Diabetes Center AUF DER BULT Hannover... 1 Division of Paediatric Endocrinology ... 1 Endokrinologie Medizinische Klinik In... 1 Erasmus Medical Centre Department of ... 1 National Centre for Rare Diseases Ist... 1 Office for Rare Conditions Royal Hosp... 1 Pediatric Endocrinology Karolinska In... 1 Sorbonne Université Inserm Centre de ... 1
- Formát
- Publikační typ
- Kategorie
- Jazyk
- Země
- Časopis/zdroj
- Dostupnost
- Vlastník
Free Medical Journals od 2012
Freely Accessible Journals od 2012
PubMed Central od 2012
Open Access Digital Library od 2012-01-01
Open Access Digital Library od 2012-07-01
Open Access Digital Library od 2012-01-01
ROAD: Directory of Open Access Scholarly Resources od 2012
PubMed
37902973
DOI
10.1530/ec-23-0434
Knihovny.cz E-zdroje
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.
- Publikační typ
- časopisecké články MeSH
Upřesnit dle MeSH
Sdílet
Název dokumentu
Po ukončení testovacího provozu bude odkaz přesměrován adresu produkční verze portálu Medvik.