CAYA Cancer Survivorship Research
- Epidemiology, Public Health, Prevention and Survivorship
Dr. Cécile Ronckers
Head of Division
The division aims to generate methodologically sound evidence on the consequences of an early-life cancer diagnosis and treatment, to improve understanding of late effects, to study potential novel avenues for late effects prevention and care, and to contribute to translation and implementation of new research findings into well-coordinated and adequately funded survivorship care and support services, in multi-disciplinary networks of scientists, care providers, and patient representatives.
About us
The newly founded Division of CAYA (Children, Adolescents and Young Adults) Cancer Survivorship Research is led by Dr Cécile M. Ronckers. The Division is associated with the National Cancer Prevention Center and the Hopp Children’s Cancer Center Heidelberg.
Treatment for cancer in early life, including Children and AYAs (adolescents and young adults), can affect many different aspects of growing up and the later course of life.
The work of the Division includes national and international observational research into somatic and other late effects among long-term survivors of CAYA cancer, building on existing and new collaborations, and capitalizing on innovative cross-discipline research opportunities at DKFZ, the Heidelberg campus, and beyond.
This includes classic retrospective studies addressing impact of cancer treatment across the full life-span as well as prospective approaches to study effects of new treatments. A data-infrastructure/registry is envisioned to support integration of clinical, epidemiological, molecular, and future intervention research. Moreover, the division supports the set-up and gradual expansion of survivorship care structures for pediatric and AYA cancer survivors, also involving scientific evaluation and addressing policy aspects.
In line with previous work, and where feasible, our work is guided by concepts of international standardization and harmonization.
With regard to somatic late effects, long-standing research lines on subsequent tumors and on late effects of early-life medical radiation exposures (diagnostic and therapeutic) will be further pursued.
The Division is supported by the Dietmar Hopp Foundation.
Team
Projects
The OptiLATER consortium project (consortium leads: Prof. Dr. U. Dirksen and Prof. Dr. V. Grünwald, University Hospital Essen; funded by the German Federal Ministry of Health) investigated how people are cared for in the long term after a cancer diagnosis and what support and information needs exist. The aim of the project is to further develop long-term follow-up care for people with and after cancer in a needs-based manner.
Project website: Home OptiLATER
One of the defined target groups are Childhood Cancer Survivors (long-term survivors of childhood cancer), who were identified through the German Childhood Cancer Registry and subsequently invited to participate in a questionnaire-based study.
The development, administration, and analysis of the questionnaires are led by Dr. G. Calaminus and Ms. Dipl.-Psych. K. Baust (University Hospital Bonn), Dr. D. Grabow (Division of Childhood Cancer Epidemiology (EpiKiK)/German Childhood Cancer Registry, University Medical Center Mainz), and Dr. Cécile Ronckers (German Cancer Research Center (DKFZ) Heidelberg/EpiKiK Mainz).
Julien Frick (DKFZ Heidelberg) leads the analyses on somatic late effects.
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)
Selected Publications
Owens CA, Ludmir EB, Liu Q, Qiu W, Gupta AC, Smith SA, Rigaud B, Brock KK, Bates JE, Meyers TG, Paulino AC, Peterson CB, Kry SF, Teepen JC, Ronckers CM, Neglia JP, Leisenring WM, Oeffinger KC, Nathan PC, Turcotte LM, Hodgson DC, Hudson MM, Robison LL, Moskowitz CS, Armstrong GT, Henderson TO, Yasui Y, Howell RM
Wang Y, Ronckers CM, van Leeuwen FE, Moskowitz CS, Leisenring W, Armstrong GT, de Vathaire F, Hudson MM, Kuehni CE, Arnold MA, Demoor-Goldschmidt C, Green DM, Henderson TO, Howell RM, Ehrhardt MJ, Neglia JP, Oeffinger KC, van der Pal HJH, Robison LL, Schaapveld M, Turcotte LM, Waespe N, Kremer LCM, Teepen JC
Moskowitz C, Ronckers CM, Chou JF, Smith SA, Novetsky Friedman D, Barnea D, Kok JL, de Vries S, Wolden SL, Henderson TO, van der Pal HJH, Kremer LCM, Neglia JP, Turcotte LM, Howell RM, Arnold MA, Schaapveld M, Aleman B, Janus C, Versluys B, Leisenring W, Sklar CA, Begg CB, Pike MC, Armstrong GT, Robison LL, van Leeuwen FE, Oeffinger KC
Kok JL, Teepen JC, van der Pal HJ, van Leeuwen FE, Tissing WJE, Neggers SJCMM, Loonen JJ, Louwerens M, Versluys B, van den Heuvel-Eibrink MM, van Dulmen-den Broeder E, Jaspers MMW, van Santen HM, van der Heiden-van der Loo M, Janssens GO, Maduro JH, Bruggink AH, Jongmans MC, Kremer LCM, Ronckers CM
Second primary thyroid cancer after a first childhood malignancy: A report from the Childhood Cancer Survivor Study
Sigurdson AJ, Ronckers CM, Mertens AC, Stovall M, Smith SA, Liu Y, Berkow R, Sklar CA, Hammond S, Neglia JP, Meadows AT, Robison LL, Inskip PD
Aleshchenko EA, Trocchi P, Apfelbacher Ch, Baust K, Calaminus G, Droege P, Horenkamp-Sonntag D, Ihle P, Klein M, Kuepper-Nybelen, Langer T, Luepkes Chr, Marschall U, Merzenich H, Ruhnke Th, Spix C, Swart E, Ronckers C
Ronckers CM, Spix C, Grabow D, Erdmann F. German Childhood Cancer Registry
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