Our research is primarily focused on epidemiological studies of the late effects of cancer treatment in survivors of childhood and young adult cancer and their offspring.
The collaborative research program Adult Life after Childhood Cancer in Scandinavia (ALiCCS) between the five Nordic countries was initiated in 2010 with the purpose of investigating somatic late effects from cancer therapy in children in the Nordic region. The overall goal for this program including 43 909 childhood cancer patients and five as many population-based comparisons is to obtain a better understanding of the mechanisms behind treatment-induced somatic diseases in different organ systems such as cardiovascular, pulmonary and endocrine disorders, which is critical for making evidence-based recommendations for future care of long-term survivors.
A strong collaboration has been established between leading research groups within this research area in both Europe and the US, i.e. PanCareSurFup focusing on cardiac disease, subsequent primary neoplasms and late mortality in survivors as well as development of guidelines to improve lives for survivors (www.pancaresurfup.eu), PanCareLIFE focusing on female infertility, cisplatin-induced ototoxicity, and quality of life (www.pancarelife.eu), and PanCareFollowUp aiming at setting up state-of-the-art late effect clinics based on international guidelines for surveillance of late effects and a new innovative model for integrated care for survivors (www.pancarefollowup).
These European consortia are great examples of how collaboration across borders improve research especially when studying a rare disease such as childhood cancer.
Whereas an increasing body of evidence exists on somatic late effects in survivors, little is known about the socioeconomic and psychosocial impact of childhood cancer in long-term survivors. To address these knowledge gaps, the research program Socioeconomic consequences in Adult Life after Childhood Cancer in Scandinavia (SALiCCS) was initiated in 2016 with the overall aim of investigating socio-economic consequences in 20 000 long-term childhood cancer survivors in Denmark, Sweden and Finland.
Findings of this research program will enrich our understanding of the difficulties young childhood cancer survivors encounter integrating into society, which can be used as the basis for development of future interventions targeting vulnerable subgroups of survivors – knowledge highly requested by the survivors and their families and of great value for the society as such.
The ultimate goal of these large research programs is to provide every childhood cancer survivor with better care and better long-term health so that they reach their full potential, and to the degree possible, enjoy the same quality of life and opportunities as their peers.
Another main research area of interest is familial cancer syndromes affecting children and adolescents focusing on evaluating health-related and psychosocial consequences of neurofibromatosis type 1 (NF1).
NF1 is one of the most common Mendelian diseases with a worldwide incidence of approximately one per 3000 individuals.
We address the critical needs of the NF community in two important areas: cognitive and social dysfunction in the setting of NF and manifestations of NF post-adolescence.
Group leader: Jeanette Falck Winther
For more than a decade, Jeanette Falck Winther’s research has focused on epidemiological studies of the late effects of cancer treatment in survivors of childhood and their offspring, including also cellular and molecular studies based on biological specimens from patients and their families for genetic evaluations.
She has extensive experience in using large-scale record linkage techniques with national health outcome registers in nationwide population-based settings and participates in National, Nordic and International studies of radiation and chemotherapy as risk factors for second cancer, organ dysfunction and genetic damage.
Jeanette Falck Winther is holding the advanced DMSc degree and is affiliated to Aarhus University and University Hospital as a Professor in Childhood Cancer.
The Leo Foundation