Role of electronic registers in medicine

Electronic registries help improve the overall understanding of supervised patients and assess the feasibility and effectiveness of diagnostic, preventive, and therapeutic interventions for certain types of diseases. Analytical data from patient registries can be used to supplement international clinical guidelines, standards, and screening programs. Controlled trial registries and clinical trial registries help generate reports on increased risk of certain diseases, identify unreported associations, confirm or refute previously reported associations with severe pathologies, and expand the existing spectrum and phenotype of the disease.

Disease registries, national clinical registries, portals, databases, registers of medical services and other information systems have already demonstrated many advantages, such as new ideas, additional basic knowledge, increased awareness, unique opportunities for researching population data, morbidity, treatment approaches and act as proven statistical tools. The main purpose and benefit of registries in medicine is to guide future efforts that will close knowledge gaps, improve disease management and prevention models.

1. Allergen Nomenclature //https://allergen. org/index.php

2. Bakulin I.G., Skalinskaja M.I., Skazyvaeva E.V. Severo-Zapadnyj registr pacientov s vospalitel’nymi zabolevanijami kishechnika: dostizhenija i uroki. Koloproktologija . 2022; 21 (1): 37-49. https://doi.org/10.33878/2073-7556-2022-211-37-49

3. Vishnjova E.A., Namazova-Baranova L.S., Antonova E.V., Alekseeva A.A., Tomilova A.Ju., Levina Ju.G., Jefendieva K.E., Voznesenskaja N.I., Volkov K.S., Selimzjanova L.R., Promyslova E.A., Smirnov V.I., Dobrynina E.A. universal’naja informacionnaja struktura kak instrument dlitel’nogo dinamicheskogo monitoringa v allergologii. Pediatricheskaja farmakologija . 2014; 11 (5): 65-70. https://doi.org/10.15690/pf.v11i5.1167

4. Vishnjova E.A., Namazova-Baranova L.S., Antonova E.V., Smirnov V.I. Pervaja otechestvennaja informacionnaja sistema baza dannyh klinicheskih sluchaev pacientov detskogo vozrasta s persistirujushhej bronhial’noj astmoj. Pediatricheskaja farmakologija . 2015; 12 (1): 18-21. https://doi.org/10.15690/pf.v12i1.1242

5. «Koncepcija razvitija jelektronnogo zdravoohranenija Respubliki Kazahstan na 20132020 gody». Prikaz MZ RK ot 03 sentjabrja 2013 g. №498 //https://www.gov.kz/uploads/2020/3/5/aa3c49fd804b3e8f715f6049fed1ba1b_original.2036350.pdf

6. Kropacheva E.S., Hakimova M.B., Krivosheeva E.N., Zemljanskaja O.A., Panchenko E.P. Tjazhelye zheludochno-kishechnye krovotechenija u bol’nyh s fibrilljaciej predserdij, poluchajushhih peroral’nye antikoaguljanty (po dannym dvadcatiletnego nabljudenija v ramkah REGistra dlitel’noj Antitromboticheskoj TerApii REGATA). Terapevticheskij arhiv . 2021; 93 (9): 1037-1043. https://doi.org/10.26442/00403660.2021.09.201019

7. Namazova-Baranova L.S., Vishnjova E.A., Dobrynina E.A., Alekseeva A.A., Belevskij A.S., Il’ina N.I., Knjazheskaja N.P., Kurbacheva O.M., Osipova G.L. Pilotnyj proekt «Obshherossijskij registr pacientov s tjazheloj bronhial’noj astmoj». Pervye rezul’taty v detskoj gruppe pacientov (nabljudatel’naja programma g. Moskvy). Pediatricheskaja farmakologija . 2017; 14 (2): 80-86. https://doi.org/10.15690/pf.v14i2.1722

8. Nurpeisov T.T. Sovershenstvovanie allergologicheskoj pomoshhi naseleniju Respubliki Kazahstan . Almaty; 2010: 45.

9. « Ob utverzhdenii Koncepcii razvitija zdravoohranenija Respubliki Kazahstan do 2026 goda ». Postanovlenie Pravitel’stva RK ot 24 nojabrja 2022 goda №945 //https://adilet.zan.kz/rus/docs/P2200000945

10. «Ob utverzhdenii Metodiki rascheta celevyh indikatorov i pokazatelej rezul›tatov, vkljuchennyh v Plan razvitija Ministerstva zdravoohranenija Respubliki Kazahstan na 2020-2024 gody». Prikaz Ministra zdravoohranenija Respubliki Kazahstan ot 8 fevralja 2022 goda №72 (s izmenenijami ot 31.10.2022 g.) //https://online.zakon.kz/Document/

11. Sizjakina L.P., Andreeva I.I. Sozdanie registra pacientov kak jeffektivnyj instrument diagnostiki pervichnyh immunodeficitov. Pediatricheskaja farmakologija . 2013; 10 (5): 94-96. https://doi.org/10.15690/pf.v10i5.831

12. Testov V.V., Sterlikov S.A., Vasil’eva I.A., Sidorova I.A., Mihajlova Ju.V. Federal’nyj registr lic, bol’nyh tuberkulezom, kak instrument monitoringa vlijanija protivojepidemicheskih meroprijatij, vyzvannyh pandemiej COVID-19, na sistemu okazanija protivotuberkuleznoj pomoshhi. Tuberkulez i bolezni legkih . 2020; 98 (11): 6-11. https://doi.org/10.21292/20751230-2020-98-11-6-11

13. Aeschlimann F.A., Misra N., Hussein T., Panaioli E., Soslow J.H., Crum K., Steele J.M., Huber S., Marcora S., Brambilla P., Jain S., Navallas M., Giuli V., Rücker B., Angst F., Patel M.D., Azarine A., Caro-Domínguez P., Cavaliere A., Di Salvo G., Ferroni F., Agnoletti G., Bonnemains L., Martins D., Boddaert N., Wong J., Pushparajah K., Raimondi F. Myocardial involvement in children with post-COVID multisystem inflammatory syndrome: a cardiovascular magnetic resonance based multicenter international study-the CARDOVID registry. J. Cardiovasc. Magn. Reson. 2021; 23 (1): 140. https://doi.org/10.1186/s12968021-00841-1

14. Aquino M., Rosner G. Systemic Contact Dermatitis. Clin. Rev. Allergy Immunol. 2019; 56 (1): 9-18. https://doi.org/10.1007/s12016-018-8686-z

15. Azad T.D., Kalani M., Wolf T., Kearney A., Lee Y., Flannery L., Chen D., Berroya R., Eisenberg M., Park J., Shuer L., Kerr A., Ratliff J.K. Building an electronic health record integrated quality of life outcomes registry for spine surgery. J. Neurosurg. Spine. 2016; 24 (1): 176-85. https://doi.org/10.3171/2015.3.SPINE141127

16. Aziz Y., Rademacher W.M.H., Hielema A., Wishaw S.B.P., van Diermen D.E., de Lange J., Vissink A., Rozema F.R. Oral adverse effects: druginduced tongue disorders. Oral Dis . 2021; 27 (6): 1528-1541. https://doi.org/10.1111/odi.13680

17. Calderón-Llosa O.M., Muñoz-Campos D., Olivares-Gómez M. Registro de miembros de la Asociación de Pacientes con Angioedema Hereditario de Perú [Registry of Members of the Association of Patients with Hereditary Angioedema of Perú]. Rev. Alerg. Mex. 2024; 71 (1): 62. https://doi.org/10.29262/ram.v71i1.1318

18. Cheng P.F., Dummer R., Levesque M.P. Data mining The Cancer Genome Atlas in the era of precision cancer medicine. Swiss Med. Wkly . 2015; 145: w14183. https://doi.org/10.4414/smw.2015.14183

19. Chikina S., Cherniak A., Merzhoeva Z., Tyurin I., Trushenko N., Proshkina A., Ataman K., Avdeev S. Russian Registry of Idiopathic Pulmonary Fibrosis: Clinical Features, Treatment Management, and Outcomes. Life (Basel). 2023; 13 (2): 435. https://doi.org/10.3390/life13020435

20. Di Nardo M., Joye R., Alunni-Fegatelli D., Cousin V.L., Thiagarajan R.R., Grazioli S., Rycus P., Polito A. Is there a role for extracorporeal membrane oxygenation in children with acute liver failure? A retrospective analysis of the Extracorporeal Life Support Organization Registry. Eur. J. Pediatr. 2024; 183 (11): 5013-5019. https://doi.org/10.1007/s00431-024-05794-y

21. Dowman L., Hill C.J., Holland A.E. Pulmonary rehabilitation for interstitial lung disease. Cochrane Database Syst Rev. 2014; (10): CD006322. https://doi.org/10.1002/14651858.CD006322.pub3

22. Genecand C., Mongin D., Koegler F., Lebowitz D., Regard S., Falcone J.L., Nehme M., Braillard O., Grira M., Joubert D., Chopard P., Delaporte E., Stirnemann J., Guessous I, Tardin A, Courvoisier DS. Cohort profile: Actionable Register of Geneva Outpatients and inpatients with SARSCoV-2 (ARGOS). BMJ Open . 2021; 11 (11): e048946. https://doi.org/10.1136/bmjopen-2021-048946

23. Ghazanfar M.N., Kibsgaard L., Thomsen S.F., Vestergaard C. Risk of comorbidities in patients diagnosed with chronic urticaria: A nationwide registrystudy. World Allergy Organ J. 2020; 13 (1): 100097. https://doi.org/10.1016/j.waojou.2019.100097

24. Gómez R.M., Jares E., Canonica G.W., Baiardini I., Passalacqua G., Sánchez Borges M., Kaplan A.P., Baena-Cagnani C.E. Why a registry of Chronic Urticaria (CUR) is needed. World Allergy Organ J . 2017; 10 (1): 16. https://doi.org/10.1186/ s40413-017-0147-2

25. Goodman RE, Breiteneder H. The WHO/IUIS Allergen Nomenclature. Allergy . 2019; 74 (3): 429-431. https://doi.org/10.1111/all.13693

26. Griese M. Chronic interstitial lung disease in children. Eur. Respir. Rev. 2018; 27 (147): 170100. https://doi.org/10.1183/16000617.0100-2017

27. Holm A., Henriksson M., Alfredsson J., Janzon M., Johansson T., Swahn E., Vial D., Sederholm Lawesson S. Long term risk and costs of bleeding in men and women treated with triple antithrombotic therapy-An observational study. PLoS One. 2021; 16 (3): e0248359. https://doi.org/10.1371/journal.pone.0248359

28. Kompanija «SK-Farmacija» prodolzhaet cifrovizaciju processa lekobespechenija . https://pharmreviews.kz/novosti/novosti-kazahstana/kompaniya-sk-farmatsiya-prodolzhaet-tsifrovizatsiyuprotsessa-lekarstvennogo-obespecheniya

29. Registr pacientov s pervichnym immunodeficitom: itogi chetyrehletnej raboty. https://pressria.ru/20201204/953014978.html

30. Respublikanskij centr jelektronnogo zdravoohranenija. https://rcez.kz/e-health

31. Informacionnye sistemy zdravoohranenija MZ RK . https://rcez.kz/informationsystems

32. Johnson K.M., Khakban A., Bryan S., Sin D.D., Sadatsafavi M. Healthcare system encounters before COPD diagnosis: a registry-based longitudinal cohort study. Thorax . 2020; 75 (2): 108-115. https://doi.org/10.1136/thoraxjnl-2019-213554

33. Kagoya H.R., Kibuule D., Rennie T.W., Wuletaw C., Mitonga K.H. Optimizing data quality of pharmaceutical information systems in public health care in resource limited settings. Res. Social Adm. Pharm. 2020; 16 (6): 828-835. https://doi.org/10.1016/j.sapharm.2019.09.057

34. Karlsson W.K., Ostinelli E.G., Zhuang Z.A., Kokoti L., Christensen R.H., Al-Khazali H.M., Deligianni C.I., Tomlinson A., Ashina H., Ruiz de la Torre E., Diener H.C., Cipriani A., Ashina M. Comparative effects of drug interventions for the acute management of migraine episodes in adults: systematic review and network meta-analysis. BMJ . 2024; 386 :e080107. https://doi.org/10.1136/bmj2024-080107

35. Kim Y.S., Han K., Lee J.H., Kim N.I., Roh J.Y., Seo S.J., Song H.J., Lee M.G., Choi J.H., Park Y.M. Increased Risk of Chronic Spontaneous Urticaria in Patients With Autoimmune Thyroid Diseases: A Nationwide, Population-based Study. Allergy Asthma Immunol Res . 2017; 9 (4): 373-377. https://doi.org/10.4168/aair.2017.9.4.373

36. Knox C., Wilson M., Klinger C.M., Franklin M., Oler E., Wilson A., Pon A., Cox J., Chin N.E.L., Strawbridge S.A., Garcia-Patino M., Kruger R., Sivakumaran A., Sanford S., Doshi R., Khetarpal N., Fatokun O., Doucet D., Zubkowski A., Rayat D.Y., Jackson H., Harford K., Anjum A., Zakir M., Wang F., Tian S., Lee B., Liigand J., Peters H., Wang R.Q.R., Nguyen T., So D., Sharp M., da Silva R., Gabriel C., Scantlebury J., Jasinski M., Ackerman D., Jewison T., Sajed T., Gautam V., Wishart D.S. DrugBank 6.0: the DrugBank Knowledgebase for 2024. Nucleic Acids Res. 2024; 52 (D1): D1265-D1275. https://doi.org/10.1093/nar/gkad976

37. Lindskou T.A., Bogh S.B., Kløjgaard T.A., Fløjstrup M., Folke F., Væggemose U., Christensen H.C., Christensen E.F., Brabrand M., Mikkelsen S. Patients’ use of Danish emergency medical services before and during the COVID-19 pandemic: a register-based study. Scand. J. Trauma. Resusc. Emerg. Med. 2024; 32 (1): 92. https://doi.org/10.1186/s13049-024-01267-1

38. Liu B., He H., Luo H., Zhang T., Jiang J. Artificial intelligence and big data facilitated targeted drug discovery. Stroke Vasc. Neurol. 2019; 4 (4): 206213. https://doi.org/10.1136/svn-2019-000290

39. Lu F., Zhao K., Ye M., Xing G., Liu B., Li X., Ran Y., Wu F., Chen W., Hu S. Efficacy and safety of second-line therapies for advanced hepatocellular carcinoma: a network meta-analysis of randomized controlled trials. BMC Cancer. 2024; 24 (1): 1023. https://doi.org/10.1186/s12885-024-12780-y

40. Magaz M., Giudicelli-Lett H., Abraldes J.G., Nicoară-Farcău O., Turon F., Rajoriya N., Goel A., Raymenants K., Hillaire S., Téllez L., Elkrief L., Procopet B., Orts L., Nery F., Shukla A., Larrue H., Degroote H., Aguilera V., Llop E., Turco L., Indulti F., Gioia S., Tosetti G., Bitto N., Becchetti C., Alvarado E., Roig C., Diaz R., Praktiknjo M., Konicek A.L., Olivas P., Fortea J.I., Masnou H., Puente Á., Ardèvol A., Navascués C.A., Romero-Gutiérrez M., Scheiner B., Semmler G., Mandorfer M., Damião F., Baiges A., Ojeda A., Simón-Talero M., González-Alayón C., Díaz A., García-Criado Á., De Gottardi A., HernándezGuerra M., Genescà J., Drilhon N., Noronha Ferreira C., Reiberger T., Rodríguez M., Morillas R.M., Crespo J., Trebicka J., Bañares R., Villanueva C., Berzigotti A., Primignani M., La Mura V., Riggio O., Schepis F., Verhelst X., Calleja J.L., Bureau C., Albillos A., Nevens F., Hernández-Gea V., Tripathi D., Rautou P.E., García-Pagán J.C.; ERN RARE-LIVER; a study of VALDIG, an EASL consortium. Porto-sinusoidal vascular liver disorder with portal hypertension: Natural history and long-term outcome. J. Hepatol. 2025; 82 (1): 72-83. https://doi.org/10.1016/j.jhep.2024.07.035

41. Maltseva N., Borzova E., Fomina D., Bizjak M., Terhorst-Molawi D., Košnik M., Kulthanan K., Meshkova R., Thomsen S.F., Maurer M.; COLDCE Steering Committee. Cold urticaria What we know and what we do not know. Allergy . 2021; 76 (4): 1077-1094. https://doi.org/10.1111/all.14674

42. Maya-González C., Tettamanti G., Taylan F., Skarin Nordenvall A., Sejersen T., Nordgren A. Cancer Risk in Patients With Muscular Dystrophy and Myotonic Dystrophy: A Register-Based Cohort Study. Neurology . 2024; 103 (8): e209883. https://doi.org/10.1212/WNL.0000000000209883

43. Mathur P., Rangamani S., Kulothungan V., Huliyappa D., Bhalla B.B., Urs V. National Stroke Registry Programme in India for Surveillance and Research: Design and Methodology. Neuroepidemiology . 2020; 54 (6): 454-461. https://doi.org/10.1159/000510482

44. McDowell P.J., McDowell R., Busby J., Eastwood M.C., Patel P.H., Jackson D.J., Mansur A., Patel M., Burhan H., Doe S., Chaudhuri R., Gore R., Dodd J.W., Subramanian D., Brown T., Heaney L.G.; UK Severe Asthma Registry. Clinical remission in severe asthma with biologic therapy: an analysis from the UK Severe Asthma Registry. Eur. Respir. J. 2023; 62 (6): 2300819. https://doi.org/10.1183/13993003.00819-2023

45. Pace W.D., Brandt E., Carter V.A., Chang K.L., Edwards C.L., Evans A., Fox C., Gaona G., Han M.K., Kaplan A.G., Kent R, Kocks J.W.H., Kruszyk M., Le Lievre C.E., Li Voti T., Mahle C., Make B., Ratigan A.R., Shaikh A., Skolnik N., Stanley B., Yawn B.P., Price D.B. COPD Population in US Primary Care: Data From the Optimum Patient Care DARTNet Research Database and the Advancing the Patient Experience in COPD Registry. Ann. Fam. Med. 2022; 20 (4): 319327. https://doi.org/10.1370/afm.2829

46. Pomés A., Davies J.M., Gadermaier G., Hilger C., Holzhauser T., Lidholm J., Lopata A.L., Mueller G.A., Nandy A., Radauer C., Chan S.K., Jappe U., Kleine-Tebbe J., Thomas W.R., Chapman M.D., van Hage M., van Ree R., Vieths S., Raulf M., Goodman R.E.; WHO IUIS Allergen Nomenclature Sub-Committee. WHO/IUIS Allergen Nomenclature: Providing a common language. Mol. Immunol. 2018; 100: 3-13. https://doi.org/10.1016/j.molimm.2018.03.003

47. Rudolfsen J.H., Vissing J., Werlauff U., Olesen C., Illum N., Olsen J., Poulsen P.B., Strand M., Born A.P. Burden of Disease of Duchenne Muscular Dystrophy in Denmark A National Register-Based Study of Individuals with Duchenne Muscular Dystrophy and their Closest Relatives. J. Neuromuscul. Dis. 2024; 11 (2): 443-457. https://doi.org/10.3233/JND-230133

48. Shi Y., Zheng H., Zhou S., Zheng Q., Zhang L., Xiao X., Cao W., Liu Y., Li Y. Efficacy and safety of acupuncture for patients with chronic urticaria: study protocol of a randomized, shamcontrolled pilot trial. Trials . 2019; 20 (1): 326. https://doi.org/10.1186/s13063-019-3433-1

49. Shioji N., Sumie M., Englesakis M., Gilfoyle E., Maynes J.T., Aoyama K. Multisystem inflammatory syndrome in children: an Umbrella review. J. Anesth. 2024; 38 (3): 309-320. https://doi.org/10.1007/s00540-024-03323-7

50. Ten Cate V., Ten Cate H., Verheugt F.W. The Global Anticoagulant Registry in the FIELD-Atrial Fibrillation (GARFIELD-AF): Exploring the changes in anticoagulant practice in patients with non-valvular Neth. Heart atrial fibrillation in the Netherlands. J. 2016; 24 (10): 574-80. https://doi.org/10.1007/s12471-016-0874-y

51. Tayefi M., Bradley M., Neijber A., Fastberg A., Ceynowa D., Eriksson M. Chronic Urticaria: A Swedish Registry-based Cohort Study on Population, Comorbidities and Treatment Characteristics. Acta Derm. Venereol. 2022; 102: adv00624. https://doi.org/10.2340/actadv.v101.737

52. Thayabaranathan T., Kim J., Cadilhac D.A., Thrift A.G., Donnan G.A., Howard G., Howard V.J., Rothwell P.M., Feigin V., Norrving B., Owolabi M., Pandian J., Liu L., Olaiya M.T. Global stroke statistics 2022. Int. J. Stroke. 2022; 17 (9): 946-956. https://doi.org/10.1177/17474930221123175

53. Torell M.F., Svennblad B., Wisten A., Börjesson E., Bergfeldt L., Stattin E.L., Börjesson M. Sudden Arrhythmic Death Syndrome in the Young: Risk Factors are Identifiable Prior to Sudden Cardiac Arrest. Am. J. Cardiol. 2025; 257: 193-199. https://doi.org/10.1016/j.amjcard.2025.09.062

54. Trogstad L., Ung G., Hagerup-Jenssen M., Cappelen I., Haugen I.L., Feiring B. The Norwegian immunisation register--SYSVAK. Euro Surveill. 2012; 17 (16): 20147.

55. Velankar S., Burley S.K., Kurisu G., Hoch J.C., Markley J.L. The Protein Data Bank Archive. Methods Mol. Biol. 2021; 2305: 3-21. https://doi.org/10.1007/978-1-0716-1406-8_1

56. Wang X., Ouyang M., Yang J., Song L., Yang M., Anderson C.S. Anticoagulants for acute ischaemic stroke. Cochrane Database Syst. Rev. 2021; 10 (10): CD000024. https://doi.org/10.1002/14651858.CD000024.pub5

57. Wang Y., Xiao J., Suzek T.O., Zhang J., Wang J., Zhou Z., Han L., Karapetyan K., Dracheva S., Shoemaker B.A., Bolton E., Gindulyte A., Bryant S.H. PubChem’s BioAssay Database. Nucleic Acids Res. 2012; 40: D400-12. https://doi.org/10.1093/nar/gkr1132

58. Wang Z., Jensen M.A., Zenklusen J.C. A Practical Guide to The Cancer Genome Atlas (TCGA). Methods Mol. Biol. 2016; 1418: 111-141. https://doi.org/10.1007/978-1-4939-3578-9_6

59. Weller K., Giménez-Arnau A., Grattan C., Asero R., Mathelier-Fusade P., Bizjak M., Hanna M., Maurer M.; CURE Investigators. The Chronic Urticaria Registry: rationale, methods and initial implementation. J. Eur. Acad. Dermatol. Venereol. 2021; 35 (3): 721-729. https://doi.org/10.1111/jdv.16947

60. Wester A., Shang Y., Toresson Grip E., Matthews A.A., Hagström H. Glucagon-like peptide-1 receptor agonists and risk of major adverse liver outcomes in patients with chronic liver disease and type 2 diabetes. Gut. 2024; 73 (5): 835-843. https://doi.org/10.1136/gutjnl-2023-330962

61. Yawn B.P., Kaplan A., Pace W.D., Kocks J.W.H., Bulathsinhala L., Carter V.A., Chang K.L., Edwards C.L., Fox C., Gaona G., Gopalan G., Han M.K., Kruszyk M., Le Lievre C.E., Mahle C.D., Make B., Philip Z.K., Price C., Ratigan A.R., Shaikh A., Skolnik N., Stanley B., Price D.B. Advancing the Patient EXperience (APEX) in COPD Registry: Study Design and Strengths. J. Am. Board Fam. Med. 2021; 34 (1): 22-31. https://doi.org/10.3122/jabfm.2021.01.200351