Authors Ana Mihor Onkološki inštitut Ljubljana, Ljubljana Vesna Zadnik Onkološki inštitut Ljubljana, Ljubljana Katarina Lokar Onkološki inštitut Ljubljana, Ljubljana Tina Žagar Onkološki inštitut Ljubljana, Ljubljana Sonja Tomšič Onkološki inštitut Ljubljana, Ljubljana Lorna Zadravec Zaletel Onkološki inštitut Ljubljana, Ljubljana DOI: https://doi.org/10.25670/oi2022-012on Keywords: cancer registry, clinical registry, childhood cancer, adolescent cancer, late effects Abstract

V Sloveniji letno za rakom zboli okoli 70 otrok in mladostnikov, mlajših od 20 let. S časom incidenca narašča, preživetje pa se toliko izboljšuje, da posledično pada umrljivost in se povečuje število preživelih, ki zaradi tveganja za pojav poznih posledic potrebujejo doživljenjsko spremljanje. Standardni nabor podatkov Registra raka Republike Slovenije vsebuje preskope podatke za nekatere poglobljene raziskave o raku v otroštvu in mladostništvu ter poznih posledicah pri preživelih. V Registru raka smo zato leta 2020 začeli aktivnosti za vzpostavitev Kliničnega registra otroških rakov in poznih posledic zdravljenja raka v otroštvu, ki deluje kot populacijski register z razširjenim naborom podatkov. Njegov osnovni namen je sistematično beleženje poznih posledic zdravljenja raka, zasnovali pa smo ga v dveh modulih. Prvi, ki je namenjen Registru raka, z uporabo pristopa aktivne registracije prek dostopa do elektronskih zapisov o bolnikih Pediatrične klinike Ljubljana ter drugih ustanov omogoča natančen popis bolezni (skladno z mednarodnimi pravili), primarnega zdravljenja (operacije, kumulativne doze posameznih zdravil, kumulativne obsevalne doze, presaditev krvotvornih matičnih celic in druga zdravljenja), morebitnih stranskih učinkov zdravljenja in morebitne ponovitve bolezni, za katero je zdravljenje popisano enako podrobno kot primarno zdravljenje. Prvi modul že vsebuje podatke za incidenčno leto 2019, sledila bo pospešena registracija nadaljnjih let. Drugi modul je namenjen Enoti za ugotavljanje poznih posledic raka Onkološkega inštituta Ljubljana, kjer bodo zdravniki med obiskom bolnika imeli dostop do vseh zbranih podatkov in možnost prospektivnega beleženja obiskov, opravljenih preiskav, izpolnjenih vprašalnikov in ugotovljenih poznih posledic. Drugi modul je v postopku testiranja uporabniške prijaznosti, razvijamo pa tudi avtomatiziran opis zdravljenja (tako imenovani potni list za preživele) in priporočil za sledenje. 

Abstract (Eng)

Around 70 children and adolescents under the age of 20 are diagnosed with cancer in Slovenia every year. Incidence is rising over time, but survival is improving significantly, resulting in a decrease in mortality and an increase in the number of survivors who need lifelong follow-up because of the risk of late effects. The Slovenian Cancer Registry's standard dataset contains data that is too scarce for some in-depth studies on childhood and adolescent cancers and late effects in survivors. At the Cancer Registry, we have therefore started activities in 2020 to establish a clinical registry of childhood cancer and late effects of childhood cancer treatment, which acts as a population-based registry with a highly expanded dataset. Its primary purpose is to systematically record the late effects of cancer treatment. It consists of two modules. The first is managed by the Cancer Registry and, using an active registration approach through access to the electronic patient records of the Ljubljana Paediatric Clinic and other institutions, it allows for a detailed inventory of the disease (in line with international rules), primary treatment (operations, cumulative doses of individual therapeutics, cumulative radiation doses, haematopoietic stem cell transplantation and other treatments, side effects of treatment) and recurrences, where the treatment is registered to the same level of detail as the primary treatment. The first module already contains data for the incidence year 2019, with accelerated registration of subsequent years to follow. The second module will be operated by the Late effects unit of the Institute of Oncology Ljubljana, where all collected data will be accessible during the patient's visit, and where visits, tests performed, questionnaires completed and late effects identified can be prospectively recorded. The second module is undergoing testing for user-friendliness, and we are developing automation of the treatment summary (survivorship passport) and follow-up recommendations.

How to Cite

Mihor , A., Zadnik, V., Lokar, K., Žagar, T., Tomšič, S., & Zadravec Zaletel, L. (2022). Clinical registry of childhood cancer and late effects of childhood cancer treatment. Onkologija : A Medical-Scientific Journal, 26(2), 40–47. https://doi.org/10.25670/oi2022-012on

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