Cohort profile: The TrueNTH Global Registry - An international registry to monitor and improve localised prostate cancer health outcomes

Sue M. Evans, Jeremy L. Millar, Caroline M. Moore, John D. Lewis, Hartwig Huland, Fanny Sampurno, Sarah E. Connor, Paul Villanti, Mark S. Litwin

Research output: Contribution to journalArticleResearchpeer-review

7 Citations (Scopus)

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.

Original languageEnglish
Article numbere017006
Number of pages8
JournalBMJ Open
Volume7
Issue number11
DOIs
Publication statusPublished - Nov 2017

Keywords

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

Cite this

Evans, Sue M. ; Millar, Jeremy L. ; Moore, Caroline M. ; Lewis, John D. ; Huland, Hartwig ; Sampurno, Fanny ; Connor, Sarah E. ; Villanti, Paul ; Litwin, Mark S. / Cohort profile : The TrueNTH Global Registry - An international registry to monitor and improve localised prostate cancer health outcomes. In: BMJ Open. 2017 ; Vol. 7, No. 11.
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Evans, SM, Millar, JL, Moore, CM, Lewis, JD, Huland, H, Sampurno, F, Connor, SE, Villanti, P & Litwin, MS 2017, 'Cohort profile: The TrueNTH Global Registry - An international registry to monitor and improve localised prostate cancer health outcomes', BMJ Open, vol. 7, no. 11, e017006. https://doi.org/10.1136/bmjopen-2017-017006

Cohort profile : The TrueNTH Global Registry - An international registry to monitor and improve localised prostate cancer health outcomes. / Evans, Sue M.; Millar, Jeremy L.; Moore, Caroline M.; Lewis, John D.; Huland, Hartwig; Sampurno, Fanny; Connor, Sarah E.; Villanti, Paul; Litwin, Mark S.

In: BMJ Open, Vol. 7, No. 11, e017006, 11.2017.

Research output: Contribution to journalArticleResearchpeer-review

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AU - Evans, Sue M.

AU - Millar, Jeremy L.

AU - Moore, Caroline M.

AU - Lewis, John D.

AU - Huland, Hartwig

AU - Sampurno, Fanny

AU - Connor, Sarah E.

AU - Villanti, Paul

AU - Litwin, Mark S.

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AB - 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.

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