ECE2023 Eposter Presentations Pituitary and Neuroendocrinology (234 abstracts)
ADH-deficiency (central diabetes insipidus) registry in Russia: current results
Alexander Lutsenko 1 , Ekaterina Pigarova 1 , Larisa Dzeranova 1 , Olga Vikulova 1 , Zhanna Belaya 1 , Liudmila Rozhinskaya 1 , Natalia Mokrysheva 1 & The Consortium CDI 2
1Endocrinology Research Centre, Moscow, Russia; 2Endocrinologists, Participating Regions, Russia
Introduction: ADH-deficiency (central diabetes insipidus, ADH-D) is a rare disease, and data on worldwide and country-specific prevalence rates are scarce. ADH-D registries could provide valuable information on epidemiology, etiological distribution, treatment requirements and potentially serve as a guide for management decisions in clinical practice.
Objectives: To assess the epidemiological data on ADH-D in Russian Registry for Central Diabetes Insipidus (RCDI)
Materials and methods: Database of the Russian Registry for Central Diabetes Insipidus, which includes data from 42 regions. Date of analysis – 10-Sep-2022.
Results: Since previously reported data in 2018, the number of patients has increased from 2004 to 2971 patients with different etiologies of ADH-D. Highest prevalence is seen in Moscow region – 5.4 cases per 100 000 population. Male to female ratio: 1253(42.2%): 1718(57.8%), mean age at diagnosis 32.6 years. Among the identified etiologies the most common were postoperative (16%), pathology of development of hypothalamic–pituitary region (9.3%), head trauma (6.6%), tumors (5.4%) and hereditary forms of ADH-D (4.3%). Rare forms of ADH-D with less than 4% overall were neuroinfection, Langergans cell hystiocytosis, sarcoidosis, Sheehan syndrome, DIDMOAD syndrome and hypophysitis. Idiopathic ADH-D was registered in 42% of patients. Data on current therapy was available in 2657 patients. Most of the patients receive oral desmopressin (n=1470, 55.3%), followed by sublingual (n=911, 34.3%) and intranasal (n=276, 10.4%) forms.
Conclusions: Russian Registry for Central Diabetes Insipidus is a promising instrument for the assessment of epidemiology and treatment modalities in a rare endocrine disorder. Further efforts are made to include all the regions of the country and improve the data quality.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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