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Design principles and core components of cervical screening registries in the human papillomavirus era: a narrative
Sara Nordqvist Kleppe1, Pouran Almstedt2, Joakim Dillner1
1Karolinska Institutet, Karolinska University Hospital, Center for Cervical Cancer Elimination, Stockholm, Sweden.
Abstract:
Achieving the World Health Organization's cervical cancer elimination targets requires high screening coverage and timely follow-up of abnormal results. These functions depend on robust cervical screening registries capable of tracking the full continuum from invitation to testing, triage, management, and outcomes. However, most countries lack such systems; existing registries typically capture cancer incidence rather than screening pathways. The transition to human papillomavirus primary testing, the rapid expansion of self-sampling, and the need to monitor every step of the elimination cascade make modern screening registries essential. However, no global guidance exists on how to design or implement them. This narrative review proposes a comprehensive framework for cervical screening registries suited to contemporary screening strategies. The framework outlines 6 core functions that will further enable evaluation of the screening program, including defining the eligible population; monitoring or issuing invitations and reminders; screening history including human papillomavirus and triage testing; tracking follow-up and management; linking to pathology and cancer registries; and supporting routine quality assurance. A minimal data set is described, covering population records, eligibility, invitations, sample characteristics (including self-sampling), human papillomavirus results, triage investigations, follow-up procedures, and outcomes including cervical intra-epithelial neoplasia grade 2 or worse and interval cancers. The framework also details key implementation principles, including inter-operability across health information systems, digital architecture options, data quality assurance, governance and privacy considerations, and equity-focused strategies for underserved or displaced populations. The framework is adaptable across diverse health-system contexts. Establishing or strengthening cervical screening registries will be essential to support modern human papillomavirus-based screening and accelerate progress toward cervical cancer elimination.
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