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Title: | Identifying a common data dictionary across colorectal cancer outcome registries: A mapping exercise to identify opportunities for data dictionary harmonisation. | Austin Authors: | Mohan, Helen M;Sijmons, Julie M L;Maida, Jack V;Walker, Kate;Kuryba, Angela;Syk, Ingvar;Iversen, Lene H;Hariot, Alexander;Ko, Clifford Y;Tanis, Pieter J;Tollenaar, Rob A E M;Avellaneda, Nicholas;Smart, Philip J | Affiliation: | Bowel Cancer Outcomes Registry (BCOR), Australia; Bowel Cancer Outcomes Registry (BCOR), New Zealand; Austin Health, Heidelberg, Victoria, Australia; Peter MacCallum Cancer Centre, Parkville, Victoria, Australia. Dutch ColoRectal Audit (DCRA), Dutch Institute for Clinical Auditing (DICA), the Netherlands; Amsterdam University Medical Centre (UMC), Location AMC, Amsterdam, the Netherlands. Austin Health National Bowel Cancer Audit (NBOCA), England, UK; National Bowel Cancer Audit (NBOCA), Wales, UK; Royal College of Surgeons of England, London, England, UK. Swedish Colorectal Cancer Registry (SCRCR), Sweden; Skåne University Hospital Lund, Lund, Sweden. Danish Colorectal Cancer Group (DCCG) Database, Denmark; Aarhus University Hospital (AUH), Aarhus, Denmark. Bowel Cancer Outcomes Registry (BCOR), Australia; Bowel Cancer Outcomes Registry (BCOR), New Zealand; Peter MacCallum Cancer Centre, Parkville, Victoria, Australia. American College of Surgeons (ACS), United States. Dutch ColoRectal Audit (DCRA), Dutch Institute for Clinical Auditing (DICA), the Netherlands; Amsterdam University Medical Centre (UMC), Location AMC, Amsterdam, the Netherlands. Base Nacional de Cáncer Colorrectal en Argentina (BNCCR-A), Argentinian Colorectal Cancer Consortium (ACCC), Argentina; Norberto Quirno Center for Medical Education and Clinical Research, Buenos Aires, Argentina. |
Issue Date: | 29-Dec-2023 | Date: | 2023 | Publication information: | European Journal of Surgical Oncology : the Journal of the European Society of Surgical Oncology and the British Association of Surgical Oncology 2023-12-29; 50(2) | Abstract: | The development of colorectal cancer outcome registries internationally has been organic, with differing datasets, data definitions and infrastructure across registries which has limited data pooling and international comparison. Currently there is no comprehensive data dictionary identified as a standard. This study is part of an international collaboration that aims to identify areas of data capture and usage which may be optimised to improve understanding of colorectal cancer outcomes. This study aimed to compare and identify commonalities and areas of difference across major colorectal cancer registries. We sought to establish datasets comprising of mutually collected common fields, and a combined comprehensive dataset of all collected fields across major registries to aid in establishing a future colorectal cancer registry database standard. This mixed qualitative and quantitative study compared data dictionaries from three major colorectal cancer outcome registries: Bowel Cancer Outcomes Registry (BCOR) (Australia and New Zealand), National Bowel Cancer Audit (NBOCA) (United Kingdom) and Dutch ColoRectal Audit (DCRA) (Netherlands). Registries were compared and analysed thematically, and a common dataset and combined comprehensive dataset were developed. These generated datasets were compared to data dictionaries from Sweden (SCRCR), Denmark (DCCG), Argentina (BNCCR-A) and the USA (NAACCR and ACS NSQIP). Fields were assessed against prominent quality indicator metrics from the literature and current case-use. We developed a combined comprehensive dataset of 225 fields under seven domains: demographic, pre-operative, operative, post-operative, pathology, neoadjuvant therapy, adjuvant therapy, and follow up/recurrence. A common dataset was developed comprising 38 overlapping fields, showing a low degree of mutually collected data, especially in preoperative, post operative and adjuvant therapy domains. The BNCCR-A, SCRCR and DCCG databases all contained a high percentage of common dataset fields. Fields were poorly comparable when viewed form current quality indicator metrics. This study mapped data dictionaries of prominent colorectal cancer registries and highlighted areas of commonality and difference The developed common field dataset provides a foundation for registries to benchmark themselves and work towards harmonisation of data dictionaries. This has the potential to enable meaningful large-scale international outcomes research. | URI: | https://ahro.austin.org.au/austinjspui/handle/1/34970 | DOI: | 10.1016/j.ejso.2023.107937 | ORCID: | Journal: | European Journal of Surgical Oncology : the Journal of the European Society of Surgical Oncology and the British Association of Surgical Oncology | Start page: | 107937 | PubMed URL: | 38232520 | ISSN: | 1532-2157 | Type: | Journal Article | Subjects: | Audit Colorectal cancer Core dataset Data dictionary Dataset Metadata PROMS Quality indicators Registry |
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