Childhood and Adolescent Cancer Survivor and Follow-up Studies
Aree / Gruppi di ricerca
Partecipanti al progetto
Descrizione del progetto
Five-year survival after cancer during childhood or adolescence is now almost 80% in most developed countries. The growing numbers of survivors brings increasing concern about the long-term consequences of treatment to growing organs and tissues. As part of a pan-European network of professionals and survivors and their families, PanCareSurFup, a new FP7-funded project, will carry out a series of epidemiologic studies of the most serious complications of long-term survival. Sixteen European networks and institutions will follow about 80,000 survivors of childhood and adolescent cancer, making PanCareSurFup the largest study of its kind to date. • Cohort-based risk assessments of all second malignancies, cardiac disease and late mortality, that is, deaths after 5 year from diagnosis. • Nested case-control-based risk assessments for cardiac disease, subsequent primary sarcomas and subsequent primary carcinomas. Over five years (2011 – 2016), PanCareSurFup will develop risk estimates for cardiac disease, second cancers and late mortality. A key component will be establishing the doses of radiotherapy to each organ, enabling tighter estimates of risk. These data, with results from other studies, will be the basis for establishing guidelines for follow-up in Europe, including suggestions for clinical networks to enable care to continue seamlessly from paediatric to adult settings. Finally, dissemination of the results will be achieved through conferences, workshops, newsletters and blogs, and partnerships with survivors and parents. PanCareSurFup’s studies are intended to lead to increased cooperation between treatment and advocacy groups, reduce disparities in survival and improve outcomes for children and adolescents diagnosed with cancer in Europe.
Risultati e pubblicazioni
During the first project period Ethical approvals have been obtained by all Partners and Data providers for the cohort study and for most of the case studies and late mortality, according to plan. Deliverables and Milestones up to month 18 have been provided to the European Commission via the Participants Portal.
For Work package 1, after a call for data, data has been received in Mainz from intended registries both for the large group of former childhood cancer patients as well as for the case studies on second tumours and heart problems and for data on late mortality. This is according to expectations. A Study protocol with details on how this is done has been put together by Work packages 1-5 and data bases for the studies have been set up. For Work package 2, the planning of collection of radiotherapy data from Partners and Data providers is done. Guidelines are being put together. The latest dosimetry software is being developed and tested. Uncertainties in the estimation of the radiation dose received by different parts of the body are being investigated, even for those patients where no radiotherapy records are available. This has been done for the heart, kidneys and thyroid. Radiation therapy technical records are in for 560 patients. Work package 3 has worked on the verification of heart problems in the cohorts in the study. Together with WP 2 and WP 4 a web-based computerised system for the collection, abstraction (finding out which chemotherapy and which doses of chemotherapy and radiotherapy each patient received), storage and international sharing for WP 1-4 has been produced. A manual for this has been done and a training course for all Partners and Data providers will run later this year (2012) in collaboration with WP 2 and WP 4. Numerous telephone and web-based conferences have been held for WP 1-5 also including the coordinator. The work in the case studies has been prepared. Work package 4 has mostly worked together with WP 1-5 and WP 2-3 due to similar issues. These issues have been worked on and solutions and methods produced in the Study protocol previously mentioned. The work has gone according to plan. The same issues regarding the case studies for WP 3 apply also to WP 4. Work package 5 has actively contributed in the telephone and web-based conferences and to the development of the Study protocol. A call for data relating to late mortality has been sent out. So far, four cohorts have been delivered to the data centre in Mainz, totalling almost 26,000 five-year survivors with 4,165 events (late death). Work is on-going according to plan. Work package 6 has produced a Protocol for Guideline Development. A questionnaire survey to identify current long-term follow-up practices is being circulated to targeted respondents across Europe, analysis to be done later in the fall of 2012. A total of 17 web conferences have been held, including 2 training web conferences. A web based protocol for the methodology to use when developing guidelines has been produced with large input from Partner #7, AMC. The production of guidelines within WP 6 has been harmonised with the recently (2010) formed International Guideline Harmonization Group to avoid duplication of effort and to maximise the possible output from WP 6. Two manuscripts in relation to this have been submitted to European Journal of Cancer and Journal of Clinical Oncology, respectively. Work package 7 has held two meetings. The first was a Survivorship conference in Dublin in November 2011 and the second a symposium in connection with a bike race for survivors in Italy in May 2012. WP 7 has also produced a large A4 sized four-page document on the project as well as shorter pamphlets on the project that have been translated into several languages. The consortium web site has been activated in close collaboration with WP 8 and Partner #1, ULUND. Through Partner # 15, SIOPE, much information related to the project have been put on different social media.
Potential impact: The strength and diversity of this project lies in its reach, from trying to estimate how much radiation various parts of the body receives during radiotherapy for childhood cancer, to a variety of studies about second tumours, to heart problems due to radiotherapy and chemotherapy and to late mortality, none of which has been satisfactorily addressed in the past due to the scarcity of each late event in itself. This will yield information that will be translated into guidelines and disseminated to the research communities, to survivors and their families and to the general public. This pan-European study will pool patients from large national registries thus becoming the largest study of childhood cancers in the world. The benefits are that for the first time, we can develop accurate estimates of the risks arising from very specific therapies for life-threatening late effects. For instance, there is very little known of the ways in which the aging process, normal to all of us, may be accelerated or altered in survivors of childhood and adolescent cancer. Existing data suggests that cardiovascular diseases and second malignancies may occur at higher rates than expected for older survivors, but detailed information is lacking. PANCARESURFUP will be able to provide a great deal of detailed information on precise risks for heart problems, for second tumours and for late mortality among the oldest groups of survivors. The organisation of the work packages allows for the pooling of data from European collaborators for different studies via one channel (WP1). This will save time and costs. The collaboration between the work packages especially WP1-5 and WP8 is very strong and integrated. This structure let's us run several studies at the same time (WP2-5). The consortium comprises European experts from different disciplines (clinical and epidemiological) with many decades of experience in long-term surveillance of former childhood cancer patients, bringing their expertise in building up European structures of surveillance in timely fashion. By using and spreading the information gathered in the project to the clinical communities, cancer therapies with fewer side effects may be developed thanks to preventive measures. In addition, the information gained through work on guidelines, models of follow-up care and transition will also have profound impact on the ultimate prognosis and quality-of-life of survivors. By increasing the general knowledge of late effects in the EU community and the specific knowledge in all those involved, health promotion will be made easier. Already, this project contributes to the EU-incentive of research on cancer in general and long-term side effects in particular. The results of this project will enhance public awareness of the issue of long-term survivors after cancer in childhood and adolescence across Europe, as well as that of the European Community including survivors and their families as well as health care authorities. Harmonised guidelines can contribute to a decrease in health care costs, allowing national health systems to use resources in the best possible way. Finally, the establishment of a virtual pan-European database of late effects in long-term survivors of cancer in childhood and adolescent cancer (WP1) will allow easier collection of new data and puts in place a structure for future research questions.