Analysis for medical care to children with congenital heart disease in Russian Federation and precondition for Registry in the era of digital medical information systems

Authors: Golukhova E.Z., Kim A.I., Zavalikhina T.V., Nefedova I.E., Chernogrivov A.E., Avakova S.A.

Company: Bakoulev National Medical Research Center for Cardiovascular Surgery, Moscow, Russian Federation

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Type:  Reviews


DOI: https://doi.org/10.24022/1997-3187-2023-17-3-315-321

For citation: Golukhova E.Z., Kim A.I., Zavalikhina T.V., Nefedova I.E., Chernogrivov A.E., Avakova S.A. Analysis for medical care to children with congenital heart disease in Russian Federation and precondition for Registry in the era of digital medical information systems. Creative Cardiology. 2023; 17 (3): 315–21 (in Russ.). DOI: 10.24022/1997-3187-2023-17-3-315-321

Received / Accepted:  04.09.2023 / 28.09.2023

Keywords: congenital heart disease vertically integrated medical information system registry for congenital heart disease infant mortality

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Abstract

The article discusses the current state of the problem of providing medical care to children with congenital heart diseases (CHD). Analyses of the volume of operative care for children of the first year of life and the causes of infant mortality in the Russian Federation due to congenital heart d diseases were carried out. In the current socio-economic conditions, the strategic moment is to create a Registry of CHD based on an automated platform that provides access to data and changes them for all patients with CHD. In addition to important issues related to the accumulation and storage of patient data, are their tracking and monitoring, quality control of care, independent evaluation of the results of medical and diagnostic activities of institutions. The resulting analysis will help to identify regions with weak prenatal diagnosis or lack of human resources, insufficient equipment with medical equipment, the establishment of new criteria, standards and regulations for decision-making.

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About Authors

  • Elena Z. Golukhova, Dr. Med. Sci., Professor, Academician of RAS, Director; ORCID
  • Aleksey I. Kim, Dr. Med. Sci., Professor, Deputy Director for Medical Work with Infants and Young Children; ORCID
  • Tatiana V. Zavalikhina, Cand. Med. Sci., Deputy Chief Physician; ORCID
  • Inessa E. Nefedova, Dr. Med. Sci., Head of Department; ORCID
  • Aleksey E. Chernogrivov, Dr. Med. Sci., Leading Researcher, Cardiac Surgeon; ORCID
  • Susanna A. Avakova, Cand. Med. Sci., Head of Department; ORCID

Chief Editor

Leo A. Bockeria, MD, PhD, DSc, Professor, Academician of Russian Academy of Sciences, President of Bakoulev National Medical Research Center for Cardiovascular Surgery