Managing a Pan-European Consortium on Late Effects among Long-Term Survivors of Childhood and Adolescent Cancer—The PanCareLIFE Project

Abstract

PanCareLIFE brought together European partners and is the largest study to have evaluated the issues of fertility impairment, hearing loss, and health-related quality of life in survivors of childhood and adolescent cancer. Successful delivery of the project aims did not evolve solely from scientific qualities. Organizational structure and careful information management were key components for its successful completion and are retrospectively assessed in this paper. PanCareLIFE used cohort studies, case-control studies, clinical evaluation of hearing, and genetic testing to study 32,000 survivors from 25 data providers. A management team implemented the organizational structures, was the decision making body, developed and maintained a communication plan, and supervised deadlines, and made timely decisions. A biostatistics support group and an ethical advisory board were established. A publication committee ensured quality and accuracy of publications and is jointly responsible for the sustainability of the project. The chosen management structure of PanCareLIFE can serve as a blueprint for the management of complex international projects. Apart from the survivors themselves, various target audiences like oncology researchers, health care providers, and policy makers can derive benefits from the project. The results can also be used in oncological frontline therapy to reduce toxicity.

The impact of the temporal sequence of cranial radiotherapy and platin‐based chemotherapy on hearing impairment in pediatric and adolescent CNS and head‐and‐neck cancer patients: A report from the PanCareLIFE consortium

“…This retrospective study included data of pediatric and adolescent cancer patients who participated in Work Package 5 of the PCL consortium (http://www.pancarelife.eu). 23,24 This data was gathered from 12 data providers (mostly pediatric oncology clinics) in 7 European countries between January 2016 and April 2018 (Supplementary Data, Table 1). The inclusion criteria specified age at diagnosis younger than 18 years old, treatment with cisplatin and/or carboplatin as well as cranial radiotherapy and no evidence of HL prior to the start of their treatment (Figure 1).…”

Effect of Genetic Variation in CYP450 on Gonadal Impairment in a European Cohort of Female Childhood Cancer Survivors, Based on a Candidate Gene Approach: Results from the PanCareLIFE Study

“…This international retrospective study is part of PanCareLIFE, a pan-European research project including 28 institutions from 13 countries addressing ototoxicity, fertility, and quality of life [ 8 , 28 , 29 ]. Demographic, disease, and treatment data were abstracted from medical records.…”

Die Kohorte der 41.000 Langzeitüberlebenden des Deutschen Kinderkrebsregisters

“…Hierzu sei auf eine Übersichtsarbeit über die in Europa bestehenden Kohorten nach Krebsbehandlung im Kindesalter [24] ebenso verwiesen wie auf 4 innerhalb des europäischen Pan-Care-Netzwerkes [25] initiierte europäische Studien: PanCareSurFup (Laufzeit: 2011-2017) hat sich mit Zweittumoren, kardialen Spätfolgen und Spätmortalität beschäftigt [26,27], PanCareLIFE (2013-2018) mit genetischen Determinanten von Fertilitätsproblemen und Schwerhörigkeit nach platinhaltiger Chemotherapie sowie mit Lebensqualitätseinschränkungen [28,29]. In der PanCareFollowUp-Studie (seit 2019) werden, basierend auf bereits existenten Nachsorgeempfehlungen, personenzentrierte Nachsorgemodelle in 4 europäischen Ländern implementiert [30].…”