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  • Periodic Report Summary 2 - PANCARELIFE (PanCare Studies in Fertility and Ototoxicity to Improve Quality of Life after Cancer during Childhood, Adolescence and Young Adulthood)

PANCARELIFE Report Summary

Project ID: 602030
Funded under: FP7-HEALTH
Country: Germany

Periodic Report Summary 2 - PANCARELIFE (PanCare Studies in Fertility and Ototoxicity to Improve Quality of Life after Cancer during Childhood, Adolescence and Young Adulthood)

Project Context and Objectives:
The number of survivors of childhood cancer in Europe has steadily increased as therapies and supportive care have improved. Survival rates after childhood cancer now reach and exceed 80% in developed European countries. However, the treatments that have improved survival are harsh and cause serious late effects that can greatly reduce the long-term quality of life of survivors. It is estimated that as many as 80% of survivors have experienced at least one serious late effect by their middle years. Late effects are varied and can include impairments in quality of life, as well as infertility and inner ear problems (ototoxicity).

Managing late effects is essential to providing the best possible long-term care for survivors, after the cancer is cured. Better management of late effects is also important for health care systems - as the number of survivors increases, costs of treatment of late effects will also rise. Research is needed to develop models that match individual patients with effective treatments with the fewest possible late effects in order to prevent or minimise the impact of late effects. Survivors and their families also need evidence-based counselling and education to prevent or better manage late effects.

The goal of PanCareLIFE is to help survivors of cancer to face fewer late effects, such as fertility loss or inner ear problems, and enjoy the same quality of life and opportunities as their peers who have not had cancer. In order to prevent or reduce the impact of late effects on cancer survivors, we will study fertility, ototoxicity and quality of life.

Fertility - The effects of cancer treatments on fertility can be minimised by providing patients with counselling about their options for fertility preservation. PanCareLIFE will develop guidelines for fertility preservation, as there is little uniformity in fertility preservation care for children diagnosed with cancer. To ensure high-quality care, evidence-based clinical practice guidelines are essential. PanCareLIFE will also improve fertility outcomes for survivors by identifying genetic and non-genetic risk factors for fertility impairment - better knowledge of risk factors for individual patients will help doctors to choose cancer treatments less likely to impair fertility and to provide fertility preservation planning for those at high risk for impairment.

Ototoxicity (Inner ear problems) - In order to develop more effective ways of protecting hearing in survivors, PanCareLIFE will identify both genetic and non-genetic risk factors for inner ear problems. This will improve the outcomes for survivors by allowing doctors to choose treatments that will reduce the risk of inner ear problems for each individual patient based on their individual risk profile.

Quality of Life - As cancer survivors live longer, cancer researchers must focus on ensuring that survivors have the best possible quality of life. PanCareLIFE will determine the main predictors of impaired quality of life in order to enable better quality of life monitoring during treatment and follow-up care for survivors.

In addition to helping survivors, PanCareLIFE will advance cancer research. The rarity of childhood cancer and differences in the way in which data from cancer studies is collected and managed make it hard to study late effects. PanCareLIFE researchers will work with other childhood cancer initiatives to develop a harmonised approach to data management that ensures that data can be used in future. The data (questionnaires and genetic samples) provided by participants in PanCareLIFE research studies are vital for these pioneering studies.

PanCareLIFE will also identify both genetic and non-genetic risk factors for late effects that can be used by researchers developing new clinical trials in order to promote cancer therapies with fewer late effects. Knowing an individual patient’s risk factors will help to personalise treatments and reduce side effects.

Project Results:
In order to carry out our research studies in fertility, ototoxicity and quality of life, PanCareLIFE researchers have developed Study Protocols describing our research questions and the data we need to collect. As the data collected from across Europe will vary by data provider, we first needed to agree on a set of common, harmonised variables that will be used to describe all survivors from the many data providers participating in PanCareLIFE. These variables have now been agreed - we will collect lots of different information about survivors, such as what type of cancer they had, what treatments they received and their quality of life after treatment.

The Study Protocols are now complete and ethics approvals have been obtained to collect data from survivors across Europe and beyond (Germany, Netherlands, France, Switzerland, Czech Republic, United Kingdom, Poland, Austria, Norway, Israel). In 2015, data providers began to collect and securely transfer their data to the central data centre in Mainz, Germany. Baseline data from approximately 15,500 survivors has already been sent and the data centre is now performing quality checks. More data is still being collected and sent to the data centre - we will complete this work in 2017.

Most of the data used in PanCareLIFE comes from medical records, cancer registries and patient questionnaires, but the project also includes the analysis of biological samples (serum, DNA) and audiological data. Serum samples from 1,695 survivors have been collected for hormonal analysis for the fertility studies and 1,277 DNA samples have been collected for genetic testing for fertility and hearing impairment studies. 9,204 audiograms from 1,848 survivors have also been collected and analysed to assess hearing impairment.

In parallel, significant progress has been made in our work on fertility preservation guidelines and patient education. Recruitment to our intervention on patient education has been completed for the control group in Germany, Poland and the Czech Republic. We are now recruiting survivors to the intervention group.

Research into late effects of childhood cancer is important, but we also need to make sure that what we learn is used to improve treatment and follow-up care for survivors. Clinical guidelines make sure that what we learn is used to help doctors, survivors and their families make the best choices for treatment and follow-up care. In PanCareLIFE, we are focusing on developing clinical guidelines for fertility preservation. So far, we have assembled a group of international experts who have assessed existing guidelines, defined the key questions our guidelines should address and started to identify evidence to support our guideline development.

In addition to collecting data, running the intervention study and developing clinical guidelines, PanCareLIFE has been actively communicating our work to key stakeholders, including other European cancer projects and organisations for survivors of childhood cancer and their families. We have developed brochures and flyers to explain what the project is about, as well as published our first newsletter. The communication work has built on the extensive network of researchers and survivor advocates already established by the PanCare network and sister project, PanCareSurFup.

Potential Impact:
PanCareLIFE will enable better care for survivors in a number of important ways. Firstly, the project will generate new evidence about genetic and non-genetic risk factors for fertility impairment and inner ear problems that will allow doctors to assess the risk of individual patients for late effects, and then to choose treatments that will be most effective against the cancer but with the lowest risk for late effects. Secondly, evidence-based guidelines for fertility preservation will be developed to allow survivors and their families to make more informed choices and better manage potential fertility late effects. Thirdly, recommendations for standardised hearing tests for before, during and after treatment will be developed in order to support better follow-up care. Lastly, an evidence-based and risk-adapted model for long-term care, including regular assessment of quality of life will be developed.

In addition to improving care for survivors, PanCareLIFE will advance cancer research. Our new evidence about genetic and non-genetic risk factors for fertility impairment and inner ear problems will not only to advance our understanding of late effects and how to manage them in long-term follow-up care, but also to support the development of better treatments in future. PanCareLIFE will also improve how researchers use data collected in national cancer registries, clinical trials and other studies by developing a harmonised approach for data collection. This will ensure that the data provided by cancer survivors in the past, present and future can be easily used again in future research, ensuring that the greatest possible benefits are achieved from the data.

Social and economic benefits will also arise from the project. Treatment of late effects will place an increasing burden on healthcare systems as the number of survivors of childhood cancer rises. Prevention of late effects through more personalised treatment decisions and better management of late effects during follow-up care will reduce associated health care costs. Improvements to survivor quality of life will also have social benefits as survivors are more likely to remain productive members of society, requiring less support from families and other carers.

Delivering these impacts is a key focus of the project. Since the beginning of the project, PanCareLIFE researchers have been actively engaging with survivor organisations, cancer researchers, the general public and the media to establish communication channels. As we work to collect our data and complete our research, our focus has been on introducing the project and its aims, but we will begin to communicate project results as they are generated. In future, links with clinical trialists, healthcare providers and policymakers will also be established, as these stakeholders are essential for ensuring that the research results of the project are translated into practice in healthcare systems.

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