Knowledge and insights from a maturing international clinical quality registry

Author:

Sampurno Fanny1ORCID,Kowalski Christoph2,Connor Sarah E3,Nguyen Anissa V3,Acuña Àngels Pont4,Ng Chi-Fai5,Foster Claire6ORCID,Feick Günter7,Boronat Olatz Garin4,Dieng Sebastian8,Brglevska Silvana9,Ferrante Stephanie10,Leung Steven5,Villanti Paul9,Moore Caroline M11,Graham Ian D12,Millar Jeremy L1ORCID,Litwin Mark S13ORCID,Papa Nathan1ORCID

Affiliation:

1. School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia

2. Certification, German Cancer Society—Krebsgesellschaft, Berlin, Germany

3. Department of Urology, David Geffen School of Medicine, University of California, Los Angeles, California, USA

4. Health Services Research Group, IMIM (Hospital del Mar Medical Research Institute), Barcelona, Spain

5. SH Ho Urology Centre, The Chinese University of Hong Kong, Hong Kong, China

6. School of Health Sciences, University of Southampton, Southampton, UK

7. Patient Support Association Bundesverband Prostatakrebs Selbsthilfe, Bonn, Germany

8. Data Management, OnkoZert, Neu-Ulm, Germany

9. Movember Foundation, Melbourne, Victoria, Australia

10. Department of Urology, University of Michigan (on behalf of MUSIC), Ann Arbor, Michigan, USA

11. Department of Urology, Division of Surgical and Interventional Science, University College London, London, UK

12. School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada

13. Department of Urology, David Geffen School of Medicine, Department of Health Policy & Management, Fielding School of Public Health, University of California, Los Angeles, California, USA

Abstract

Abstract Since 2017, the TrueNTH Global Registry (TNGR) has aimed to drive improvement in patient outcomes for individuals with localized prostate cancer by collating data from healthcare institutions across 13 countries. As TNGR matures, a systematic evaluation of existing processes and documents is necessary to evaluate whether the registry is operating as intended. The main supporting documents: protocol and data dictionary, were comprehensively reviewed in a series of meetings over a 10-month period by an international working group. In parallel, individual consultations with local institutions regarding a benchmarking quality-of-care report were conducted. Four consensus areas for improvement emerged: updating operational definitions, appraisal of the recruitment process, refinement of data elements, and improvement of data quality and reporting. Recommendations presented were drawn from our collective experience and accumulated knowledge in operating an international registry. These can be readily generalized to other health-related reporting programs beyond clinical registries.

Funder

Movember Foundation

CIHR Foundation

Publisher

Oxford University Press (OUP)

Subject

Health Informatics

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