Preview

PULMONOLOGIYA

Advanced search

The role of patient registries in chronic obstructive pulmonary disease management: overview of global and Russian studies

https://doi.org/10.18093/0869-0189-2025-35-5-694-705

Abstract

A review of existing international and Russian data on registries and studies was conducted to identify key variables for effective patient monitoring, as part of the development of a regional registry of patients with chronic obstructive pulmonary disease (COPD) in the Tomsk region. The aim. The primary goal of this review is to identify the most significant and informative variables to be included in the registry, as well as to determine reliable information sources for their collection, enabling a more comprehensive understanding of COPD progression and adaptation of treatment approaches according to local conditions and patient needs. Conclusion. Registries play a crucial role in COPD management by allowing the collection and analysis of data that contribute to improving the quality of healthcare and scientific research. Creating and maintaining a registry in Russia will enhance the quality of diagnosis and treatment, as well as optimize medical care costs for COPD patients.

About the Authors

N. D. Yarovoy
Federal State Funded Educational Institution of Higher Education “Siberian State Medical University” of the Ministry of Health of the Russian Federation ; Regional State Budgetary Healthcare Institution “Medical and Sanitary Unit No.2”, Tomsk Region Healthcare Department
Russian Federation

Nikolay D. Yarovoy, Resident, Department of Biochemistry and Molecular Biology with a course in Clinical Laboratory Diagnostics; Medical
Statistician

Moskovskiy tract 2, Tomsk, 634050, tel.: (3822) 64-48-01 

ul. Bely Kuna 3, Tomsk, 634040 


Competing Interests:

No conflicts of interest were declared by the authors. 



A. V. Teteneva
Federal State Funded Educational Institution of Higher Education “Siberian State Medical University” of the Ministry of Health of the Russian Federation ; Regional State Budgetary Healthcare Institution “Medical and Sanitary Unit No.2”, Tomsk Region Healthcare Department
Russian Federation

Anna V. Teteneva, Doctor of Medicine, Professor, Department of Internal Medicine Propaedeutics with a course of therapy of the Pediatric Faculty; Deputy Chief Physician for clinical and expert work

Moskovskiy tract 2, Tomsk, 634050, tel.: (3822) 64-44-65

ul. Bely Kuna 3, Tomsk, 634040 


Competing Interests:

No conflicts of interest were declared by the authors. 



I. D. Bespalova
Federal State Funded Educational Institution of Higher Education “Siberian State Medical University” of the Ministry of Health of the Russian Federation
Russian Federation

Inna D. Bespalova, Doctor of Medicine, Head of Department, Professor, Department of Propaedeutics of Internal Medicine with a course of therapy of the Pediatric Faculty

Moskovskiy tract 2, Tomsk, 634050, tel.: (3822) 64-44-65 (add. 1917) 


Competing Interests:

No conflicts of interest were declared by the authors. 



K. F. Tetenev
Federal State Funded Educational Institution of Higher Education “Siberian State Medical University” of the Ministry of Health of the Russian Federation
Russian Federation

Konstantin F. Tetenev, Candidate of Medicine, Associate Professor, Department of Propaedeutics of Internal Medicine with a course of therapy of the Pediatric Faculty

Moskovskiy tract 2, Tomsk, 634050, tel.: (3822) 90-11-01 (add. 1917)
 


Competing Interests:

No conflicts of interest were declared by the authors. 



E. L. Mishustina
Federal State Funded Educational Institution of Higher Education “Siberian State Medical University” of the Ministry of Health of the Russian Federation
Russian Federation

Elena L. Mishustina, Candidate of Medicine, Associate Professor, Department of Propaedeutics of Internal Diseases with a Course of Therapy, Pediatric Faculty

Moskovskiy tract 2, Tomsk, 634050, tel.: (3822) 90-11-01 (add. 1917) 


Competing Interests:

No conflicts of interest were declared by the authors. 



References

1. Naldi L., Chatenoud L. Registry research in dermatology. Dermatol. Clin. 2009; 27 (2): 185–191, vii. DOI: 10.1016/j.det.2008.11.004.

2. Drolet B., Johnson K. Categorizing the world of registries. J. Biomed. Inform. 2008; 41 (6): 1009–1020. DOI: 10.1016/j.jbi.2008.01.009.

3. Solomon D., Henry R., Hogan J. et al. Evaluation and implementation of public health registries. Public Health Rep. 1991; 106 (2): 142–150. Available at: https://pmc.ncbi.nlm.nih.gov/articles/PMC1580226/

4. Mulder D., Spicer J. Registry-based medical research: data dredging or value building to quality of care? Ann. Thorac. Surg. 2019; 108 (1): 274–282. DOI: 10.1016/j.athoracsur.2018.12.060.

5. Pass H.I. Medical registries: continued attempts for robust quality data. J. Thorac. Oncol. 2010; 5 (6, Suppl. 2): S198–199. DOI: 10.1097/JTO.0b013e3181dcf957.

6. Mathis-Edenhofer S., Piso, B. [Types of medical registries – definitions, methodological aspects and quality of the scientific work with registries]. Wien. Med Wochenschr. 2011; 161: 580–590. DOI: 10.1007/s10354-011-0040-5 (in German).

7. Bisdas T., Bohan P., Lescan M. et al. Research methodology and practical issues relating to the conduct of a medical device registry. Clin. Trials. 2019; 16 (5): 490–501. DOI: 10.1177/1740774519855395.

8. Safiri S., Carson-Chahhoud K., Noori M. et al. Burden of chronic obstructive pulmonary disease and its attributable risk factors in 204 countries and territories, 1990–2019: results from the Global Burden of Disease Study 2019. BMJ. 2022; 378: e069679. DOI: 10.1136/bmj-2021-069679.

9. Boers E., Barrett M., Su J.G. et al. Global burden of chronic obstructive pulmonary disease through 2050. JAMA Netw. Open. 2023; 6 (12): e2346598. DOI: 10.1001/jamanetworkopen.2023.46598.

10. Drapkina O., Kontsevaya A., Mukaneeva D. et al. [Forecast of the socioeconomic burden of COPD in the Russian Federation in 2022]. Pul'monologiya. 2022; 32 (4): 507–516. DOI: 10.18093/0869-0189-2022-32-4-507-516 (in Russian).

11. Antonov N.S., Sakharova G.M., Rusakova L.I., Salagay O.O. [Dynamics of the incidence of respiratory diseases among the population of the Russian Federation in 2010–2022]. Meditsina. 2023; 11 (3): 1–17. DOI: 10.29234/2308-9113-2023-11-3-1-17 (in Russian).

12. Yin P., Wu J., Wang L. et al. The burden of COPD in China and its provinces: findings from the global burden of disease study 2019. Front. Public Health. 2021; 10: 859499. DOI: 10.3389/fpubh.2022.859499.

13. Pace W.D., Brandt E., Carter V.A. et al. 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. Family Med. 2022; 20 (4): 319–327. DOI: 10.1370/afm.2829.

14. Couper D., LaVange L.M., Han M. et al. Design of the subpopulations and intermediate outcomes in COPD study (SPIROMICS). Thorax. 2014; 69 (5): 491–494. DOI: 10.1136/thoraxjnl-2013-203897.

15. Russo R., Coultas D., Ashmore J. et al. Chronic obstructive pulmonary disease self-management activation research trial (COPD–SMART): results of recruitment and baseline patient characteristics. Contemp. Clin. Trials. 2015; 41: 192–201. DOI: 10.1016/j.cct.2015.01.018.

16. Pasquale C.B., Choate R., McCreary G. et al. Self-reported COPD medication use and adherence in the COPD Foundation patient-powered research network. Chron. Obstruct. Pulmon. Dis. 2021; 8 (4): 474–487. DOI: 10.15326/jcopdf.2021.0252.

17. Prieto-Centurion V., Rolle A.J., Au D.H. et al. Multicenter study comparing case definitions used to identify patients with chronic obstructive pulmonary disease. Am. J. Respir. Crit. Care Med. 2014; 190 (9): 989–995. DOI: 10.1164/rccm.201406-1166OC.

18. Regan E.A., Hokanson J.E., Murphy J.R. et al. Genetic epidemiology of COPD (COPDGene) study design. COPD. 2010; 7 (1): 32–43. DOI: 10.3109/15412550903499522.

19. Maselli D.J., Bhatt S.P., Anzueto A. et al. Clinical epidemiology of COPD: insights from 10 years of the COPDGene study. Chest. 2019; 156 (2): 228–238. DOI: 10.1016/j.chest.2019.04.135.

20. Lacasse Y., Krishnan J.A., Maltais F., Ekström M. Patient registries for home oxygen research and evaluation. Int. J. Chron. Obstruct. Pulmon. Dis. 2019: 1299–1304. DOI: 10.2147/COPD.S204391.

21. Hatam S., Scully S.T., Cook S. et al. A harmonised approach to curating research-ready datasets for asthma, chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD) in England, Wales and Scotland Using Clinical Practice Research Datalink (CPRD), Secure Anonymised Information Linkage (SAIL) Databank and DataLoch. Clin. Epidemiol. 2024; 16: 235–247. DOI: 10.2147/CLEP.S437937.

22. Yawn B.P., Kaplan A., Pace W.D. et al. Advancing the patient experience (APEX) in COPD registry: study design and strengths. J. Am. Board Fam. Med. 2021; 34 (1): 22–31. DOI: 10.3122/jabfm.2021.01.200351.

23. Jones R.C.M., Price D., Ryan D. et al. Opportunities to diagnose chronic obstructive pulmonary disease in routine care in the UK: a retrospective study of a clinical cohort. Lancet Respir. Med. 2014; 2 (4): 267–276. DOI: 10.1016/ S2213-2600(14)70008-6.

24. Smith C., Hiyoshi A., Hasselgren M. et al. The increased burden of morbidity over the life-course among patients with COPD: a register-based cohort study in Sweden. Int. J. Chron. Obstruct. Pulmon. Dis. 2024; 19: 1375–1389. DOI: 10.2147/COPD.S459784.

25. Rimland J.M., Abraha I., Luchetta M.L. et al. Validation of chronic obstructive pulmonary disease (COPD) diagnoses in healthcare databases: a systematic review protocol. BMJ Open. 2016; 6 (6): e011777. DOI: 10.1136/bmjopen-2016-011777.

26. Lacasse Y. et al. Patient registries for home oxygen research and evaluation. Int. J. Chron. Obstruct. Pulmon. Dis. 2019; 14: 1299–1304. DOI: 10.2147/COPD.S204391.

27. Lisspers K., Johansson G., Jansson C. et al. Improvement in COPD management by access to asthma/COPD clinics in primary care: data from the observational PATHOS study. Respir. Med. 2014; 108 (9): 1345–1354. DOI: 10.1016/j.rmed.2014.06.002.

28. Bilde L., Rud Svenning A., Dollerup J. et al. The cost of treating patients with COPD in Denmark – a population study of COPD patients compared with non-COPD controls. Respir. Med. 2007; 101 (3): 539–546. DOI: 10.1016/j.rmed.2006.06.020.

29. Thomsen R.W., Lange P., Hellquist B. et al. Validity and underrecording of diagnosis of COPD in the Danish National Patient Registry. Respir. Med. 2011; 105 (7): 1063–1068. DOI: 10.1016/j.rmed.2011.01.012.

30. Edwards C.L., Kaplan A.G., Yawn B.P. et al. Development of the advancing the patient experience in COPD registry: a modified Delphi study. Chronic Obstr. Pulm. Dis. 2021; 8 (1): 135–151. DOI: 10.15326/jcopdf.2020.0154.

31. Nielsen A.O., Lange P., Hilberg O. et al. COPD and smoking status – it does matter: characteristics and prognosis of COPD according to smoking status. Chronic Obstr. Pulm. Dis. 2024; 11 (1): 56–67. DOI: 10.15326/jcopdf.2023.0433.

32. Klitgaard A., Ibsen R., Hilberg O., Løkke A. Urban-rural and socio-economic differences in inhaled corticosteroid treatment for chronic obstructive pulmonary disease: a nationwide register-based cross-sectional study. Respir. Med. 2024; 229: 107678. DOI: 10.1016/j.rmed.2024.107678.

33. Lange P., Tøttenborg S.S., Sorknæs A.D. et al. Danish register of chronic obstructive pulmonary disease. Clin. Epidemiol. 2016; 8: 673–678. DOI: 10.2147/CLEP.S99489.

34. Rønn C., Sivapalan P., Eklöf J. et al. Hospitalization for chronic obstructive pulmonary disease and pneumonia: association with the dose of inhaled corticosteroids. A nation-wide cohort study of 52 100 outpatients. Clin. Microbiol. Infect. 2023; 29 (4): 523–529. DOI: 10.1016/j.cmi.2022.11.029.

35. Moger T.A., Amundsen O., Tjerbo T. et al. Innovations in use of registry data (INOREG)-design of a registry-based study analyzing care pathways and outcomes for chronic patients. Nord. J. Health Econ. 2023; 6 (1): 129–146. DOI: 10.5617/njhe.10097.

36. Hetlevik Ø., Melbye H., Gjesdal S. GP utilisation by education level among adults with COPD or asthma: a cross-sectional register-based study. NPJ Prim. Care Respir. Med. 2016; 26: 16027. DOI: 10.1038/npjpcrm.2016.27.

37. Bakken I.J., Ariansen A.M.S., Knudsen G.P. et al. The Norwegian patient registry and the Norwegian registry for primary health care: research potential of two nationwide health-care registries. Scand. J. Public Health. 2020; 48 (1): 49–55. DOI: 10.1177/1403494819859737.

38. Mueller S., Gottschalk F., Groth A. et al. Primary data, claims data, and linked data in observational research: the case of COPD in Germany. Respir. Res. 2018; 19 (1): 161. DOI: 10.1186/s12931-018-0865-1.

39. Chorostowska-Wynimko J., Struniawski R., Sliwinski P. et al. The national alpha-1 antitrypsin deficiency registry in Poland. COPD: J. Chron. Obstruct. Pulmon. Dis. 2015; 12 (Suppl. 1): 22–26. DOI: 10.3109/15412555.2015.1021915.

40. Salmen T., Traila D., Strambu I. R. The results of a three year analysis on sarcoidosis patients registered in the regis electronic registry. Int. Med. 2018; 15 (4): 7–13. DOI: 10.2478/inmed-2018-0025.

41. Wang Y., He R., Ren X. et al. Developing and validating prediction models for severe exacerbations and readmissions in patients hospitalised for COPD exacerbation (SERCO) in China: a prospective observational study. BMJ Open Respir. Res. 2024; 11 (1): e001881. DOI: 10.1136/bmjresp-2023-001.

42. Zhao X., Liu G., Liu D. et al. Clinical and economic burden of anxiety/depression among older adult COPD patients: evidence from the COPD-AD China Registry study. Front. Psychiatry. 2024; 14: 1221767. DOI: 10.3389/fpsyt.2023.1221767.

43. Zhou Y., He S., Wang W. et al. Development and validation of prediction models for exacerbation, frequent exacerbations and severe exacerbations of chronic obstructive pulmonary disease: a registry study in North China. COPD. 2023; 20 (1): 327–337. DOI: 10.1080/15412555.2023.2263562.

44. Kobayashi S., Chiba F., Ishida M. et al. Physical activity and outcomes in Japanese patients with chronic obstructive pulmonary disease: from the Ishinomaki COPD Network registry. Respir. Investigat. 2024; 62 (1): 107–112. DOI: 10.1016/j.resinv.2023.10.007.

45. Lam S.S.W., Fang A.H.S., Koh M.S. et al. Development of a real-world database for asthma and COPD: the SingHealth-Duke-NUS-GSK COPD and Asthma Real-World Evidence (SDG-CARE) collaboration. BMC Med. Inform. Decis. Mak. 2023; 23 (1): 4. DOI: 10.1186/s12911-022-02071-6.

46. Romiti G.F., Corica B., Mei D.A. et al. Impact of chronic obstructive pulmonary disease in patients with atrial fibrillation: an analysis from the GLORIA-AF registry. Europace. 2024; 26 (1): euae021. DOI: 10.1093/europace/euae021.

47. Faner R., Tal-Singer R., Riley J.H. et al. Lessons from ECLIPSE: a review of COPD biomarkers. Thorax. 2014; 69 (7): 666–672. DOI: 10.1136/thoraxjnl-2013-204778.

48. Vestbo J., Anderson W., Coxson H.O. et al. Evaluation of COPD longitudinally to identify predictive surrogate end-points (ECLIPSE). Eur. Respir. J. 2008; 31 (4): 869–873. DOI: 10.1183/09031936.00111707.

49. Greulich T., Altraja A., Barrecheguren M. et al. Protocol for the EARCO registry: a pan-European observational study in patients with α1-antitrypsin deficiency. ERJ Open Res. 2020; 6 (1): 00181–2019. DOI: 10.1183/23120541.00181-2019.

50. Shubin I.V., Mishlanov V.Yu., Koshurnikova E.P. [Clinical electronic registry of patients with chronic obstructive pulmonary disease: analysis of the effectiveness of drug therapy and vaccination in patients with chronic obstructive pulmonary disease and their impact on mortality]. Prakticheskaya pul'monologiya. 2020; (3): 40–48. Available at: https://www.atmosphere-ph.ru/modules/Magazines/articles//pulmo/pp_3_2020_40.pdf (in Russian).

51. Shubin I.V., Mishlanov V.Yu., Koshurnikova E.P. [Clinical electronic registry of patients with chronic obstructive pulmonary disease: analysis of factors associated with mortality]. Bull. Modern Clin. Med. 2021; 14 (1): 62–68. DOI: 10.20969/VSKM.2021.14(1).62-68 (in Russian).

52. Bekker K.N., Mishlanov V.J., Koshumikova Е.P., Katkova А.V. [Algorithm for optimizing dynamic monitoring of patients with combined COPD and cardiovascular disease using data from a regional electronic registry]. Ural'skiy meditsinskiy zhurnal. 2019; 172 (4): 75–81. Available at: http://elib.usma.ru/handle/usma/11365 (in Russian).

53. Mishlanov V.Yu., Shubin I.V., Bekker K.N. et al. [Analysis of the electronic clinical registry of patients with chronic obstructive pulmonary disease: effectiveness of dynamic monitoring and various treatment programs]. Terapevticheskiy arkhiv. 2019; 91 (1): 78–83. DOI: 10.26442/00403660.2019.01.000034 (in Russian).

54. Fateeva O.V., Prozorova G.G., Kozhevnikova S.A., Tribuntseva L.V. [The role of the primary care physician in assisting patients with chronic obstructive pulmonary disease]. Lechashchiy vrach. 2024; (3): 89–94. DOI: 10.51793/OS.2024.27.3.015 (in Russian).

55. Kuzyukin N.N., Solovyeva Yu.A. [The role of chronic respiratory diseases (OD) in the structure of general incidence as a tool for planning the observation of these patients]. Sovremennye problemy zdravookhraneniya i meditsinskoy statistiki. 2024; (1): 804–820. DOI: 10.24412/2312-2935-2024-1-804-820 (in Russian).


Supplementary files

Review

For citations:


Yarovoy N.D., Teteneva A.V., Bespalova I.D., Tetenev K.F., Mishustina E.L. The role of patient registries in chronic obstructive pulmonary disease management: overview of global and Russian studies. PULMONOLOGIYA. 2025;35(5):694-705. (In Russ.) https://doi.org/10.18093/0869-0189-2025-35-5-694-705

Views: 29


ISSN 0869-0189 (Print)
ISSN 2541-9617 (Online)