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Cancer

Session: Poster Session B

(028) Results from an analysis of data from the US SEER registries to estimate the prevalence of gastroenteropancreatic neuroendocrine tumors in the US, in the context of limited available evidence for regulatory discussions

Tuesday, August 27, 2024
8:00 AM – 6:00 PM CEST
Location: Convention Hall II

    Presenting Author(s)

  • Melissa Bauer, PhD, MPH, CPH (she/her/hers)

    Associate Director Epidemiologist
    Quantitative Safety & Epidemiology, Patient Safety & Pharmacovigilance, Development, Novartis Pharma AG, Basel, Switzerland, Switzerland

    • Co-Author(s)

  • SR

    Savanna Reid

    Quantitative Safety & Epidemiology Unit, Cognizant Technology Solutions, Teaneck, New Jersey, USA, United States

  • AB

    Andreas Brückner

    Quantitative Safety & Epidemiology, Patient Safety & Pharmacovigilance, Development, Novartis Pharma AG, Basel, Switzerland, Switzerland

  • NP

    Niki Palmetto

    Quantitative Safety & Epidemiology, Patient Safety & Pharmacovigilance, Development, Novartis Pharmaceuticals Corporation, East Hanover, New Jersey, USA, United States

Background: Gastroenteropancreatic neuroendocrine tumors (GEP-NETs) represent the majority (55-70%) of all NETs. Despite reports of increasing incidence of this cancer, there is a lack of recent published prevalence estimates of GEP-NETs in the US that also account for changes in histological codes in the US Surveillance, Epidemiology, and End Results (SEER) program registries.

Objectives: To summarize the epidemiological literature on patients diagnosed with GEP-NETs in the US, and to estimate the 15-year limited duration prevalence (15-yr LDP) in the US in 2020 and the number of persons living with GEP-NETs in the US in 2024.

Methods: A targeted review of the epidemiological literature published in English from 01 January 2013 through 12 April 2024 was conducted with PubMed and Embase. Epidemiological evidence on GEP-NETs was examined in the US SEER, Orphanet, and the National Organization of Rare Disorders databases. Data from the US SEER 22 registries, representing 41.7% of the US population, was analyzed using SEER*Stat software (version 8.4.3.) to estimate the 15-yr LDP of GEP-NETs in the US for 2020. These analyses accounted for recent changes to the International Classification of Diseases for Oncology, 3rd edition (ICD-O-3) histological codes in the US SEER registries. The available SEER grading criteria were not fully aligned with the 2019 World Health Organization grading criteria for GEP-NETs. To estimate the number of individuals diagnosed with GEP-NETs in the US as of 03 June 2024, the population of the US on that date was multiplied by the crude 15-yr LDP of GEP-NETs in the US in 2020.

Results: All 12 population-based publications identified in the targeted literature review included neuroendocrine carcinomas in their definition of GEP-NETs, which is not consistent with the most current diagnostic criteria. Furthermore, the most recent publication reported estimates based on data up through 2015 from the US SEER registries. Using current diagnostic criteria in the US SEER registries, the estimated crude 15-yr LDP of GEP-NETs in 2020 was 4.33 per 10,000 persons. Based on the reported US population on 03 June 2024 of 336,531,533 persons, we estimated the number of individuals living with GEP-NETs in the US in 2024 to be 145,718 persons.

Conclusions: The published literature on GEP-NETs prevalence in the US was not aligned with current diagnostic practices. After considering changes in the ICD-O-3 histological codes for GEP-NETs, the estimated prevalence of individuals living with GEP-NETs in the US was 4.33 per 10,000 persons in 2020, amounting to 145,718 persons in 2024.