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Health services research
Cohort profile
Cohort profile: the TrueNTH Global Registry - an international registry to monitor and improve localised prostate cancer health outcomes
  1. Sue M Evans1,
  2. Jeremy L Millar2,
  3. Caroline M Moore3,
  4. John D Lewis4,
  5. Hartwig Huland5,
  6. Fanny Sampurno1,
  7. Sarah E Connor6,
  8. Paul Villanti7,
  9. Mark S Litwin6
  1. 1Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia
  2. 2William Buckland Radiotherapy Centre, Alfred Hospital, Melbourne, Victoria, Australia
  3. 3Department of Urology, Division of Surgical and Interventional Science, University College London, London, UK
  4. 4Department of Oncology, University of Alberta, Edmonton, Alberta, Canada
  5. 5Universitatsklinikum Hamburg-Eppendorf, Hamburg, Hamburg, Germany
  6. 6Department of Urology, David Geffen School of Medicine, University of California, Los Angeles, USA
  7. 7Movember Foundation, East Melbourne, Victoria, Australia
  1. Correspondence to Dr Sue M Evans; sue.evans{at}monash.edu

Abstract

Purpose Globally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP).

Participants Sites with existing CaP databases in Movember fundraising countries were invited to participate in the international registry. In total, 25 Local Data Centres (LDCs) representing 113 participating sites across 13 countries have nominated to contribute to the project. It will collect a dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised CaP.

Findings to date A governance strategy has been developed to oversee registry operation, including transmission of reversibly anonymised data. LDCs are represented on the Project Steering Committee, reporting to an Executive Committee. A Project Coordination Centre and Data Coordination Centre (DCC) have been established. A project was undertaken to compare existing datasets, understand capacity at project commencement (baseline) to collect the ICHOM dataset and assist in determining the final data dictionary. 21/25 LDCs provided data dictionaries for review. Some ICHOM data fields were well collected (diagnosis, treatment start dates) and others poorly collected (complications, comorbidities). 17/94 (18%) ICHOM data fields were relegated to non-mandatory fields due to poor capture by most existing registries. Participating sites will transmit data through a web interface biannually to the DCC.

Future plans Recruitment to the TrueNTH Global Registry-PCOR project will commence in late 2017 with sites progressively contributing reversibly anonymised data following ethical review in local regions. Researchers will have capacity to source deidentified data after the establishment phase. Quality indicators are to be established through a modified Delphi approach in later 2017, and it is anticipated that reports on performance against quality indicators will be provided to LDCs.

  • quality in health care
  • prostate disease
  • international health services

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2017-017006

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    Footnotes

    • Contributors SE, JM, CM, PV and ML contributed to the concept and design of the study. SE, FS, SC, JM, CM, JL, HH, MS contributed to the acquisition, analysis and interpretation of the data. SE wrote the first draft of the protocol. JM, CM, JL, HH, FS, SC, PV and ML revised the protocol critically for important intellectual content. All authors have read and approved the final version of the manuscript to be published.

    • Funding This work was supported by the Movember Foundation.

    • Competing interests SE receives a Monash Partners Academic Health Science Centre Clinician Fellowship.

    • Ethics approval Monash University Human Research Ethics Committee (project 8437).

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement This study describes attributes of databases and contains no patient-level data.