The Australia New Zealand Congenital Colorectal Registry (ANZCCoRe): Driving innovation through collaboration

• Published in: Journal of Pediatric Surgery Open Vol. 6; p. 100121
• Main Authors: Hageman, Isabel C., Trajanovska, Misel, van Rooij, Iris A.L.M., de Blaauw, Ivo, King, Sebastian K.
• Format: Journal Article
• Language: English
• Published: Elsevier Inc 01.04.2024; Elsevier
• Subjects: Anorectal malformations; Australia; Colorectal surgery; Data; Hirschsprung disease; New Zealand; Patient registry; ERN; ADE; ANZCCoRe; FAIR; CDE; EDC; ANZ; PDE; SNOMED CT; Hirschsprung disease; Patient registry; ARM-Net; Colorectal surgery; Anorectal malformations; ORPHAcodes; CSV; OMIM; Data; ICD; New Zealand; CPRS; CRF; RCH; ANZAPS; FAQ; REDCap; HCS; Australia; ARM; HD
• ISSN: 2949-7116; 2949-7116
• DOI: 10.1016/j.yjpso.2024.100121

•Patient registries play an important role in research on anorectal malformations and Hirschsprung disease by facilitating the sharing and collating of data.•The Australia New Zealand Congenital Colorectal Registry (ANZCCoRe) is an international, multicentre patient registry aiming to improve clinical outcomes, standardise care, and enhance collaborations between paediatric surgical centres.•In publishing the ANZCCoRe methodology, an example is provided for development of other rare disease patient registries in areas where patients as well as healthcare sites are dispersed. Colorectal paediatric surgeons, rare and complex colorectal patients, and data on this patient group are dispersed far and wide in Australia and New Zealand (ANZ). Online databases facilitate sharing and collating of data, and may help to connect physically separated clinicians and researchers. The Australia New Zealand Congenital Colorectal Registry (ANZCCoRe) is an international, multicentre patient registry that aims to improve clinical outcomes, standardise care, and enhance collaborations between centres with expertise in paediatric colorectal conditions across ANZ. The ANZCCoRe will collect retrospective and prospective clinical data of patients with anorectal malformations (ARM) and/or Hirschsprung disease (HD) through an electronic data capturing platform. Collected data will include demographic characteristics, diagnostics, care pathways, associated anomalies, surgical details and complications, and functional outcomes. The datapoints will be categorised into required core data elements and requested additional data elements. Data will be deidentified and stored on secured servers, meeting ethical and legal requirements. Data quality procedures will exist and feasible application of the findability, accessibility, interoperability, and reusability (FAIR) principles will promote data sharing and reuse with other registries. Besides gaining a better understanding of the patient and disease characteristics, monitoring care, and evaluating health-related outcomes, the ANZCCoRe provides a source for potential research participants. Lastly, the ANZCCoRe enhances advocacy for patients and families affected by colorectal conditions. The ANZCCoRe is the first multicentre congenital colorectal patient registry in this geographical region. Its strengths lie in facilitating research, standardisation of care, patient advocacy, and collaboration with paediatric surgical centres across ANZ and beyond. Level of Evidence: IV