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PanCareLIFE: The Swiss Childhood Cancer Registry joins a European study on quality of life and late effects after childhood cancer

The project: PanCareLIFE is a 5-year (2013-8) EU Framework 7 Programme that studies the impact of treatment regimes on the long-term health of childhood cancer survivors. Specifically, PanCareLIFE will evaluate quality of life and the risks of lowered female fertility and loss of hearing. It will develop guidelines to preserve fertility and widely disseminate the results of this project. The European Union supports this project, and has contributed 6 million Euros in funding.

The Problem: More effective therapies and better supportive care have increased survival rates after childhood cancer to nearly 80% in developed European countries, and this has resulted in a steady increase in the number of survivors in the population. However, the treatments that have increased survival are harsh and can have serious side-effects that decrease survivors’ quality of life in the long term. The goal of PanCareLIFE is to raise the quality of life of those who survived cancer diagnosed before they were 25 to the same level as their peers who did not have cancer. PanCareLIFE uses observational data and molecular genetic studies to investigate late effects that reduce fertility and impair hearing (ototoxicity), and will assess health-related quality of life (HRQoL). Information gained from PanCareLIFE’s studies will be incorporated into new guidelines for to preserve fertility.

The Solution: The number of survivors with late effects is small in any one country, but large cohorts are required to accurately estimate risk. PanCareLIFE has assembled a team of prominent investigators from eight European countries who will provide over 12,000 well-characterised research subjects, allowing PanCareLIFE to identify both genetic and non-genetic risk factors linked to decreases in fertility and ototoxicity. PanCARELife will also conduct studies that evaluate the effect of impaired fertility and ototoxicity on quality of life. PanCareLIFE will advance knowledge in survivorship studies by evaluating large cohorts with observational and genetic tools that increase understanding of individual risk factors. Survivors may then be stratified into groups, and thus benefit from more personalized, evidence-based, care. In the future, survivors can expect effective therapies to have less severe side effects, and will experience a seamless transition to long-term follow-up care These approaches will increase quality of life for those survivors whose cancer was diagnosed in childhood.

Swiss participation: The ongoing Swiss Childhood Cancer Survivor Study, a nationwide long-term follow-up study on quality of life, health problems and follow-up care after childhood cancer, provides the context for Swiss Childhood Cancer Registry (SCCR) participation in this project. SCCR will contribute data on HRQoL from more than 2200 survivors. The University of Bern, in collaboration with the University of Münster in Germany, will be responsible for the statistical analysis of HRQoL data from eight different European countries. Switzerland also contributes data on fertility and hearing problems from the Swiss childhood Cancer Survivor study and provides epidemiological and statistical expertise.

Project Info: PanCareLIFE is an EU FP7 project (Project No. 602030) funded by the FP7-HEALTH-2013-INNOVATION-1 HEALTH.2013.2.4.1-3 call: Investigator-driven supportive and palliative care clinical trials and observational studies HEALTH. Further information on Swiss participation in this study can be obtained from Prof. Claudia Kuehni (kuehni[at]ispm.unibe.ch) or Ms Rahel Kuonen (rkuonen[at]ispm.unibe.ch).

 

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