OSTEOGENESIS IMPERFECTA IN CHILDREN IN THE RUSSIAN FEDERATION: RESULTS OF THE FEDERAL REGISTRY AUDIT
https://doi.org/10.15690/pf.v13i1.1514
Abstract
Background: Development and maintenance of registries of patients with rare diseases helps to determine the prevalence thereof, assess quality of medical care rendering, develop possible ways of optimizing patient management and calculate the necessary budget.
Objective: Our aim was to study validity of including pediatric patients to the federal osteogenesis imperfecta registry and to determine disease characteristics, current or previous treatment.
Methods: We conducted a retrospective study of the data on patients with ost eogenesis imperfecta included in the federal registry of the Ministry of Health of Russia. We provide results of the first registry audit. We analyzed the clinical and laboratory data provided in the medical documentation.
Results: Validity of inclusion of patients with osteogenesis imperfecta in the registry was confirmed for 323 (96.4%) patients out of 335. In most cases (> 90%), bone fractures take place at the age of 6 months or later. Conclusion: It is reasonable to develop an electronic individual record form for patients with osteogenesis imperfecta for long-term monitoring of health condition and the conducted treatment.
About the Authors
G. T. Yakhyayeva
Scientific Center of Children’s Health
Russian Federation
Moscow
Russian Federation
Moscow
L. S. Namazova-Baranova
Scientific Center of Children’s Health;
Sechenov First Moscow State Medical University;
Pirogov Russian National Medical Research University
Russian Federation
Moscow
Russian Federation
Moscow
T. V. Margiyeva
Scientific Center of Children’s Health;
Sechenov First Moscow State Medical University
Russian Federation
Moscow
Russian Federation
Moscow
O. V. Chumakova
Scientific Center of Children’s Health;
Ministry of Health of Russia
Russian Federation
Moscow
Russian Federation
Moscow
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Review
For citations:
Yakhyayeva G.T., Namazova-Baranova L.S., Margiyeva T.V., Chumakova O.V. OSTEOGENESIS IMPERFECTA IN CHILDREN IN THE RUSSIAN FEDERATION: RESULTS OF THE FEDERAL REGISTRY AUDIT. Pediatric pharmacology. 2016;13(1):44-48. (In Russ.) https://doi.org/10.15690/pf.v13i1.1514
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