CAYA Cancer Survivorship Research

The VersKiK project (Care, Healthcare Needs, and Service Requirements of Individuals After Childhood or Adolescent Cancer) focuses on the diverse needs and requirements that arise in the context of long-term and late effects following cancer during childhood or adolescence. To assess these needs, VersKiK uses privacy-compliant linked data from the German Childhood Cancer Registry, treatment documentation, and statutory health insurance claims data.

Project website: https://innovationsfonds.g-ba.de/projekte/verskik.305

Consortium lead: Prof. Dr. Enno Swart (Institute of Social Medicine and Health Systems Research (ISMG), Faculty of Medicine, Otto von Guericke University Magdeburg)

Partner institutions: University Medical Center Mainz; the University Hospitals of Heidelberg/Mannheim, Bonn, Lübeck, Cologne, and Oldenburg; as well as 13 statutory health insurance providers.

Dr. Ronckers serves within the consortium, succeeding PD Dr. Claudia Spix (Mainz), as the lead expert for the methodology of long-term and late-effects research and is involved in a wide range of analyses.

The project, funded by German Cancer Aid (DKH), analyses oral health and late effects in the fields of dentistry and oral and maxillofacial surgery among Childhood Cancer Survivors (long-term survivors of childhood and adolescent cancer). Data on psychosocial consequences, care needs, and health-related quality of life are also collected. For a selected subgroup of participants, standardized dental and orthodontic examinations are additionally carried out.

Project website: Projekte – Deutsches Kinderkrebsregister

Consortium lead: Dr. Desiree Grabow (Division of Childhood Cancer Epidemiology (EpiKiK) / German Childhood Cancer Registry, University Medical Center Mainz)

Co-applicants: Prof. Dr. Christina Erbe (Department of Orthodontics, University Medical Center Mainz); PD Dr. Julia Heider (Department of Oral and Maxillofacial Surgery, University Medical Center Mainz); Dr. Cécile Ronckers (German Cancer Research Center Heidelberg / Division of Childhood Cancer Epidemiology (EpiKiK), University Medical Center Mainz)

Dr. Ronckers launched this pooling project together with local co-PIs and many international partner in 2017, while employed in the Netherlands, to harmonise data from 6 international cohorts in Northern America and Europe, with the goal of addressing gaps in knowledge regarding survivorship care (Wang et al, BMJ Open 2022). In the meantime, the internationally harmonized breast cancer surveillance guideline recommendations for CAYA cancer survivors.

https://www.ighg.org/guidelines/topics/breast-cancer/

The guidelines were updated based on this work (Mulder et al. JCO Oncol Practice, 2026) (Wang et al. Nature Med 2023). Analyses on combined effects of chest radiotherapy and reproductive factors are underway, by Dr Yuehan Wang (now at the US National Cancer Institute, Rockville MD USA). Since 2021, the pooling project is led by Dr Jop Teepen and Prof Leontien Kremer, who have launched a new study for other subsequent malignancies, conform our initial vision, to create a resource/tool to address other clinically relevant questions in CAYA cancer survivorship care.

The Survivorship Passport (Haupt et al, 2018) (Filbert et al, Eur J Cancer 2024) is a tool developed to support and empower childhood cancer survivors and their caregivers as they navigate conventional health care systems that are often not ready to provide evidence-informed, risk-stratified surveillance and coordinated survivorship care. As such, medical professionals, who are not always familiar with childhood cancer and survivorship, also may benefit from the Passport. Among other functionalities, the tool creates a standardized treatment summary. 

Suvivorship Passport: SIOP Europe

Dr Ronckers, Dr Sugden (Oxford UK, retired), Dr Zadravec Zaletel (Ljubljana, Slovenia) and Dr Haupt (Genoa Italy), lead a European team-effort to design a hierarchical coding system for radiotherapy characterization in the Survivorship Passport Tool.