Хронические диффузные заболевания печени. Регистрация и учет больных, значимость регистров

Цель. Изучить роль медицинских регистров в мониторинге, диагностике и лечении пациентов с хроническими заболеваниями печени, а также оценить международный опыт в этой области.

Материалы и методы. Был проведен обзор отечественных и зарубежных источников, включая клинические рекомендации (AASLD, EASL, KASL), эпидемиологические исследования и данные о работе крупных регистров (TARGET-LD, Global Liver Registry, DELIVER, MAFLD Registry, PBC Registry). Поиск литературы проводился за период с 2018 по 2025 год в международных научных базах данных: PUBMED/MEDLINE, Cochrane Library, ScienceDirect, а также в электронных библиотеках Wiley, Springer, Elsevier, Karger и на официальных сайтах профильных организаций (EASL, AASLD, KASL, ВОЗ).

Результаты и обсуждение. Регистры обеспечивают централизованный сбор данных о пациентах с ХДЗП, способствуя стандартизации диагностики, оценке эффективности лечения, стратификации риска и формированию доказательной базы для принятия клинических решений. Международный опыт показывает большую важность таких систем для разработки национальных стратегий здравоохранения. Однако отсутствие единых стандартов и недостаточное финансирование особенно остро ощущается в странах с ограниченными ресурсами, что приводит к фрагментации данных и невозможности проведения аналогичных исследований.

Выводы. Создание национальных регистров пациентов с ХБП в Казахстане и других странах СНГ позволит значительно улучшить качество медицинской помощи, обеспечить профессиональный подход и повысить эффективность диагностики и лечения на всех этапах.

1. Sharma A., Nagalli S. Chronic Liver Disease https://www.ncbi.nlm.nih.gov/books/NBK554597/

2. Gan C., Yuan Y., Shen H. Liver diseases: epidemiology, causes, trends and predictions. Sig. Transduct. Target Ther. 2025; 10: 33. https://doi.org/10.1038/s41392-024-02072-z

3. Cusi K., Isaacs S., Barb D., Basu R., Caprio S., Garvey W.T., Kashyap S., Mechanick J.I., Mouzaki M., Nadolsky K., Rinella M.E., Vos M.B., Younossi Z. American Association of Clinical Endocrinology Clinical Practice Guideline for the Diagnosis and Management of Nonalcoholic Fatty Liver Disease in Primary Care and Endocrinology Clinical Settings: Co-Sponsored by the American Association for the Study of Liver Diseases (AASLD). Endocr. Pract. 2022; 28 (5): 528-562. https://doi.org/10.1016/j.eprac.2022.03.010

4. Kang S.H., Lee H.W., Yoo J.J., Cho Y., Kim S.U., Lee T.H. Korean Association for the Study of the Liver (KASL). KASL clinical practice guidelines: Management of nonalcoholic fatty liver disease. Clin. Mol. Hepatol. 2021; 27 (3): 363-401. https://doi.org/10.3350/cmh.2021.0178

5. European Association for the Study of the Liver. EASL Clinical Practice Guidelines on noninvasive tests for evaluation of liver disease severity and prognosis – 2021 update. J. Hepatol. 2021; 75 (3): 659-689. https://doi.org/10.1016/j.jhep.2021.05.025

6. Ghelimici T., Lupasco I., Dumbrava V.-T., Berezovscaia E., Taran N., Golovatiuc L., Lupasco D., Harea G., Burda T. Assessment of the nutritional state of patients with chronic diffuse liver diseases. Public Health, Economy and Management in Medicine. 2023; 4 (97): 141-144. https://doi.org/10.52556/2587-3873.2023.4(97).24

7. Ivancovsky Wajcman D., Byrne C.J., Dillon J.F., Brennan P.N., Villota-Rivas M., Younossi Z.M., Allen A.M., Crespo J., Gerber L.H., Lazarus J.V. A narrative review of lifestyle management guidelines for metabolic dysfunction-associated steatotic liver disease. Hepatology. 2024; 83 (5): 1303-1325. https://doi.org/10.1097/HEP.0000000000001058

8. Barritt A.S., Yu F., Mospan A.R., Newsome P.N., Roden M., Morris H.L., Loomba R., Neuschwander-Tetri B.A. TARGET-NASH investigators. High Concordance Between Nonalcoholic Fatty Liver Disease and Metabolic Dysfunction-Associated Steatotic Liver Disease in the TARGET-NASH Real-World Cohort. Am. J. Gastroenterol. 2024; 119 (8): 1624-1627. https://doi.org/10.14309/ajg.0000000000002796

9. Hardy T., Wonders K., Younes R., Aithal G.P., Aller R., Allison M., Bedossa P., Betsou F., Boursier J., Brosnan M.J., Burt A., Cobbold J., Cortez-Pinto H., Day C.P., Dufour J.F., Ekstedt M., Francque S., Harrison S., Miele L., Nasr P., Papatheodoridis G., Petta S., Tiniakos D., Torstenson R., Valenti L., Holleboom A.G., Yki-Jarvinen H., Geier A., Romero-Gomez M., Ratziu V., Bugianesi E., Schattenberg J.M., Anstee Q.M. LITMUS Consortium. The European NAFLD Registry: A real-world longitudinal cohort study of nonalcoholic fatty liver disease. Contemp. Clin. Trials. 2020; 98: 106175. https://doi.org/10.1016/j.cct.2020.106175

10. Moon A.M., Singal A.G., Tapper E.B. Contemporary Epidemiology of Chronic Liver Disease and Cirrhosis. Clin. Gastroenterol. Hepatol. 2020; 18 (12): 2650-2666. https://doi.org/10.1016/j.cgh.2019.07.060

11. Alrubaiy L., Oztumer C.A. Setting Up a Local Registry to Improve the Care of Patients With Primary Biliary Cholangitis. Cureus. 2022; 14 (5): e25247. https://doi.org/10.7759/cureus.25247

12. Kardashian A., Serper M., Terrault N., Nephew L.D. Health disparities in chronic liver disease. Hepatology. 2023; 77 (4): 1382-1403. https://doi.org/10.1002/hep.32743

13. Khan R., Luo Y., Wu F. Machine learning based liver disease diagnosis: A systematic review. Neurocomputing. 2021; 468: 492-509. https://doi.org/10.1016/j.neucom.2021.08.138

14. Ba-Ssalamah A., Bastati N., Wibmer A., Fragner R., Hodge J.C., Trauner M., Herold C.J., Bashir M.R., Van Beers B.E. Hepatic gadoxetic acid uptake as a measure of diffuse liver disease: Where are we? J. Magn. Reson. Imaging. 2017; 45 (3): 646-659. https://doi.org/10.1002/jmri.25518

15. Taouli B., Alves F.C. Imaging biomarkers of diffuse liver disease: current status. Abdom. Radiol. (NY). 2020; 45 (11): 3381-3385. https://doi.org/10.1007/s00261-020-02619-y

16. Hagström H., Shang Y., Wester A., Widman L. Cohort profile: decoding the epidemiology of liver disease in Sweden (DELIVER). Scand. J. Gastroenterol. 2022; 57 (8): 978-983. https://doi.org/10.1080/00365521.2022.2051202

17. Ghadimi M., Habibabadi R.R., Hazhirkarzar B., Shaghaghi M., Ameli S., Khoshpouri P., Ghasabeh M.A., Gurakar A., Pawlik T.M., Kamel I.R. Advances in Imaging of Diffuse Parenchymal Liver Disease. J. Clin. Gastroenterol. 2020; 54 (8): 682-695. https://doi.org/10.1097/MCG.0000000000001380

18. Elbanna K.Y., Mansoori B., Mileto A., Rogalla P., S Guimarães L. Dual-energy CT in diffuse liver disease: is there a role? Abdom Radiol (NY). 2020; 45 (11): 3413-3424. https://doi.org/10.1007/s00261-020-02702-4

19. Bakulin I.G., Burlakova S.A., Skazyvaeva E.V., Skalinskaya M.I. Registry of patients with autoimmune liver diseases in St. Petersburg: clinical and epidemiological data. Bulletin of the North-West State Medical University named after I.I. Mechnikov. 2024; 16 (2): 61-72. https://doi.org/10.17816/mechnikov627505

20. Devarbhavi H., Asrani S.K., Arab J.P., Nartey Y.A., Pose E., Kamath P.S. Global burden of liver disease: 2023 update. J. Hepatol. 2023; 79 (2): 516-537. https://doi.org/10.1016/j.jhep.2023.03.017

21. Younossi Z.M., Stepanova M., Afendy M., Fang Y., Younossi Y., Mir H., Srishord M. Changes in the prevalence of the most common causes of chronic liver diseases in the United States from 1988 to 2008. Clin. Gastroenterol. Hepatol. 2011; 9 (6): 524-530.e1; quiz e60. https://doi.org/10.1016/j.cgh.2011.03.020

22. Kanwal F., Hernaez R., Liu Y., Taylor T.J., Rana A., Kramer J.R., Naik A.D., Smith D., Taddei T., Asch S.M. Factors Associated With Access to and Receipt of Liver Transplantation in Veterans With End-stage Liver Disease. JAMA Intern. Med. 2021; 181 (7): 949-959. https://doi.org/10.1001/jamainternmed.2021.2051

23. Samanta T., Park J.H., Kaipparettu B.A. Biosocial Determinants of Health Among Patients with Chronic Liver Disease and Liver Cancer. Cancers (Basel). 2025; 17 (5): 844. https://doi.org/10.3390/cancers17050844

24. Valery P.C., Powell E., Moses N., Volk M.L., McPhail S.M., Clark P.J., Martin J. Systematic review: unmet supportive care needs in people diagnosed with chronic liver disease. BMJ Open. 2015; 5 (4): e007451. https://doi.org/10.1136/bmjopen-2014-007451

25. Hasjim B.J., Harris A., Balbale S.N., Obayemi J.E., Beestrum M., Polineni P., Paukner M., Mohammadi M., Dentici O.C., Kershaw K.N., Lewis-Thames M.W., Mehrotra S, Ladner D.P. Social Disadvantage and Disparities in Chronic Liver Disease: A Systematic Review. Am. J. Gastroenterol. 2024; 120 (7): 1548-1566. https://doi.org/10.14309/ajg.0000000000003171

26. Naik A.D., Arney J., Clark J.A., Martin L.A., Walling A.M., Stevenson A., Smith D., Asch S.M., Kanwal F. Integrated Model for Patient-Centered Advanced Liver Disease Care. Clin. Gastroenterol. Hepatol. 2020; 18 (5): 1015-1024. https://doi.org/10.1016/j.cgh.2019.07.043

27. Ufere N.N., Lago-Hernandez C., Alejandro-Soto A., Walker T., Li L., Schoener K., Keegan E., Gonzalez C., Bethea E., Singh S., El-Jawahri A., Nephew L., Jones P., Serper M. Health care-related transportation insecurity is associated with adverse health outcomes among adults with chronic liver disease. Hepatol. Commun. 2024; 8 (1): e0358. https://doi.org/10.1097/HC9.0000000000000358

28. Capuano P., Hileman B., Tigano S., Magro B., Lo Re V., Liotta R., Sciveres M., Ranucci G., Provenzani A., Burgio G., Scardulla C., Arcadipane A., Martucci G. Telemedicine in Patients Affected by Chronic Liver Disease: A Scoping Review of Clinical Outcomes and the Devices Evaluated. J. Clin. Med. 2023; 12 (15): 5128. https://doi.org/10.3390/jcm12155128

29. Verma M., Brahmania M., Fortune B.E., Asrani S.K., Fuchs M., Volk M.L. Patient-centered care: Key elements applicable to chronic liver disease. Hepatology. 2023; 78 (1): 307-318. https://doi.org/10.1002/hep.32618

30. Mellinger J.L., Moser S., Welsh D.E., Yosef M.T., Van T., McCurdy H., Rakoski M.O., Moseley R.H., Glass L., Waljee A.K., Volk M.L., Sales A., Su G.L. Access to Subspecialty Care And Survival Among Patients With Liver Disease. Am. J. Gastroenterol. 2016; 111 (6): 838-44. https://doi.org/10.1038/ajg.2016.96

31. Fricker Z.P., Serper M. Current Knowledge, Barriers to Implementation, and Future Directions in Palliative Care for End-Stage Liver Disease. Liver Transpl. 2019; 25 (5): 787-796. https://doi.org/10.1002/lt.25434

32. Muftah A.A., Banala C., Raasikh T., Jamali T., Bustamante G., Cholankeril G., Kanwal F., Flores A., Hernaez R. Telehealth interventions in patients with chronic liver diseases: A systematic review. Hepatology. 2023; 78 (1): 179-194. https://doi.org/10.1097/HEP.0000000000000265

33. Wegermann K., Wilder J.M., Parish A., Niedzwiecki D., Gellad Z.F., Muir A.J., Patel Y.A. Racial and Socioeconomic Disparities in Utilization of Telehealth in Patients with Liver Disease During COVID-19. Dig. Dis. Sci. 2022; 67 (1): 93-99. https://doi.org/10.1007/s10620-021-06842-5

34. Rush B., Walley K.R., Celi L.A., Rajoriya N., Brahmania M. Palliative care access for hospitalized patients with end-stage liver disease across the United States. Hepatology. 2017; 66 (5): 1585-1591. https://doi.org/10.1002/hep.29297

35. Psaraki A., Ntari L., Karakostas C., Korrou-Karava D., Roubelakis M.G. Extracellular vesicles derived from mesenchymal stem/stromal cells: The regenerative impact in liver diseases. Hepatology. 2022; 75 (6): 1590-1603. https://doi.org/10.1002/hep.32129

36. Ge J., Fontil V., Ackerman S., Pletcher M.J., Lai J.C. Clinical decision support and electronic interventions to improve care quality in chronic liver diseases and cirrhosis. Hepatology. 2025; 81 (4): 1353-1364. https://doi.org/10.1097/HEP.0000000000000583

37. Su G.L., Glass L., Tapper E.B., Van T., Waljee A.K., Sales A.E. Virtual Consultations Through the Veterans Administration SCAN-ECHO Project Improves Survival for Veterans With Liver Disease. Hepatology. 2018; 68 (6): 2317-2324. https://doi.org/10.1002/hep.30074

38. Moussa D., Flores J.E., Doyle J.S., Ryan M., Wallace J., Howell J. Synthesising enablers and barriers to hepatocellular carcinoma surveillance-A systematic review of qualitative findings. PLoS One. 2025; 20 (1): e0313216. https://doi.org/10.1371/journal.pone.0313216

39. Aby E.S., Kaplan A. Addressing Social Determinants of Health to Achieve Equity in Liver Transplantation: Moving From Identification to Implementation. Transplantation. 2025; 109 (6): e266-e267. https://doi.org/10.1097/TP.0000000000005352

40. Yilma M., Dalal N., Wadhwani S.I., Hirose R., Mehta N. Geographic disparities in access to liver transplantation. Liver Transpl. 2023; 29 (9): 987-997. https://doi.org/10.1097/LVT.0000000000000182

41. Schomerus G., Leonhard A., Manthey J., Morris J., Neufeld M., Kilian C., Speerforck S., Winkler P., Corrigan P.W. The stigma of alcohol-related liver disease and its impact on healthcare. J. Hepatol. 2022; 77 (2): 516-524. https://doi.org/10.1016/j.jhep.2022.04.026

42. Sakowitz S., Bakhtiyar S.S., Mallick S., Kaldas F., Benharash P. Association of Community Socioeconomic Distress With Waitlist and Survival Outcomes in Liver Transplantation. Transplantation. 2025; 109 (6): 976-984. https://doi.org/10.1097/TP.0000000000005328

43. Kimbell B., Boyd K., Kendall M., Iredale J., Murray S.A. Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study. BMJ Open. 2015; 5 (11): e009241. https://doi.org/10.1136/bmjopen-2015-009241

44. Hyde A.M., Watt M., Carbonneau M., Eboreime E.A., Abraldes J.G., Tandon P. Understanding Preferences Toward Virtual Care: A Pre-COVID Mixed Methods Study Exploring the Perspectives of Patients with Chronic Liver Disease. Telemed J. E. Health. 2022; 28 (3): 407-414. https://doi.org/10.1089/tmj.2021.0099