IARC 60th Anniversary - 19-21 May 2026
Session : 19/05/26 - Posters
Can Data Be Automatically Transferred from Pediatric Hospitals to the Swiss Childhood Cancer Registry?
SHOMAN Y. 1,2, LEUENBERGER L. 2,3, RENGGLI A. 1,2,3, SOMMER G. 1,2, BIELICKI J. 4,5, BRAZZOLA P. 6, DELLA VALLE S. 1, DIEZI M. 7, DROZDOV D. 8, GUMY-PAUSE F. 9,10, GUERREIRO STÜCKLIN A. 11, KUEHNEL U. 1, SCHEINEMANN K. 12,13, SCHINDERA C. 2,4, SCHILLING F. 14, WAESPE N. 2,10,15, SPYCHER B. 1,2, SCHLAPBACH L. 11,16, KUEHNI C. 1,2,15, BELLE F. 2
1 Childhood Cancer Registry of Switzerland, Bern, Switzerland; 2 Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland; 3 Graduate School for Health Sciences, University of Bern, Bern, Switzerland; 4 University Children’s Hospital Basel, Basel, Switzerland; 5 Centre for Neonatal and Paediatric Infection, St George's University, London, United Kingdom; 6 Clinics of pediatrics, Institute of Pediatrics of Southern Switzerland, EOC, Bellinzona, Switzerland; 7 Lausanne University Hospital (CHUV), University of Lausanne, Lausanne, Switzerland; 8 Division of Pediatric Hematology Oncology, Children’s Hospital, Kantonsspital Aarau (KSA), Aarau, Switzerland; 9 Division of Pediatric Oncology and Hematology, Department of Women, Child and Adolescent, Geneva University Hospitals (HUG) , Geneva, Switzerland; 10 CANSEARCH Research Platform for Pediatric Oncology and Hematology, Department of Pediatrics, Gynecology and Obstetrics, Faculty of Medicine, University of Geneva, Geneva, Switzerland; 11 Division of Intensive Care Oncology and Neonatology, Children’s Research Center, University Children’s Hospital Zurich, University of Zurich, Zurich, Switzerland; 12 Division of Hematology/ Oncology, Children’s Hospital of Eastern Switzerland, St. Gallen, Switzerland; 13 Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland; 14 Children’s Hospital of Central Switzerland, Lucerne, Switzerland; 15 Division of Pediatric Hematology and Oncology, Department of Pediatrics, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland; 16 Child Health Research Centre, The University of Queensland, Brisbane, Queensland, Australia
1. Background
In Switzerland, childhood cancer registration relies on manual data collection at Swiss hospitals and at the childhood cancer registry (ChCR), resulting in substantial workload and increased risk of data entry errors. Automated data flows between hospitals and the ChCR would lower manual workload at both sites, and possibly improve data quality.
2. Objectives
The objectives of this study were to: 1) assess the quality of data available in the clinical information systems of Swiss pediatric hospitals, and 2) strengthen and streamline data flows between these hospitals and the ChCR.
3. Methods
IT collaborators from the clinical information systems of all Swiss pediatric hospitals with oncology departments identified potentially eligible patients as those with a first hospital visit for a new cancer diagnosis before age 20 between 2017 and 2023.
We deterministically linked cases identified in hospital information systems to the ChCR dataset using the unique Swiss Social Security (AHV) number. Patients without an AHV number were linked using name, sex, and date of birth. We accounted for spelling variations and typographical errors by using the FastLink package in R.
We reviewed manual medical records in one pediatric hospital for cases found in hospital information systems but not in the ChCR, to determine whether cases represented true missed cancer diagnoses at the ChCR or ineligible cases (not meeting registry inclusion criteria).
4. Results
Depending on the hospital, 8-53% of patients sent by hospitals were not registered in the ChCR. We obtained data from nine hospitals A-I: A (250 patients sent by the hospital information system; 76 (32%) not present in the ChCR), B (416; 124 [32%]), C (88; 7 [8%]), D (446 for the years 2020-2023; 79 [18%]), E (333; 90 [32%]), F (590; 38 [29%]), G (617; 285 [47%]), H (710; 366 [53%]), and I (1,274; 285 [29%]).
The two centers (G and H), with the highest percentage of patients not registered by the ChCR, provided dates of medical visits instead of dates of diagnosis. This could have contributed to overreporting, as visits may have occurred before diagnosis of cancer or during follow-up.
The manual record reviews showed that most cases from hospital D (n=79, 92%) were ineligible for the ChCR. This includes 11 (14%) residents abroad at diagnosis, 23 (29%) benign non-CNS neoplasms and 45 (57%) conditions without any confirmed neoplastic diagnosis. Only seven cases were truly missing: two infants (<4 months) and five adolescents (≥17 years). These seven cases were diagnosed at different departments: adult endocrinology, pediatric surgery, internal medicine, neurosurgery, pediatric oncology, and orthopedics (n=2).
4. Conclusions/Implications
Automated data transfer has substantial potential to improve the efficiency and quality of cancer registration, but critical challenges must be overcome. Currently, cancer-related diagnoses are not corrected in clinical information systems after completion of investigation, resulting in overreporting to the ChCR. Further refinement of these systems—including recording of the date of diagnosis and patients’ residency status at diagnosis, as well as continuous data cleaning—is essential to support high-quality automated cancer registration in the future.