PanCare childhood and adolescent cancer Survivor care and Follow-up studies (PanCareSurFup)

This five-year programme grant from the European Commission for the first pan-European collaborative study of survivors of childhood and adolescent cancer was initiated in February 2011. It includes investigators from Austria, the Nordic countries, France, Germany, the Netherlands, Italy, Slovenia, Hungary and Switzerland. The broad objectives are:

1. Establish three adverse health outcome specific and retrospectively ascertained pan-European cohorts of survivors of childhood cancer within which the occurrence of late mortality, second malignant sarcomas and carcinomas, and cardiac events have been (or may be) systematically ascertained and validated. Focusing on carcinomas which are common in the general population after age 40 years and which are frequent among survivors including commonly observed digestive and genitourinary sites.

2. Undertake individual patient radiation dosimetry for individuals included within the nested case-control studies to obtain estimates of dose to the site of development of the adverse event and the corresponding site in the matched controls.

3. Estimate the absolute risk of each of these adverse health outcomes within the relevant cohort and compare observed and expected numbers of events where general population rates are available to enable the calculation of expected numbers. Of particular interest will be the comparison of observed and expected numbers among those aged over 40 years.

4. Execute three nested case-control studies of cardiac disease, second malignant sarcoma and second malignant carcinoma, respectively, and one cohort study of late mortality, occurring among survivors to determine the aspects of radiotherapy and type and dose of chemotherapy associated with increased risk.

5. Produce clinical follow-up guidelines for health care professionals, survivors and their families based on existing evidence and the results from this study in terms of the absolute risk available from the cohort studies and the relative risks in relation to risk factors from the case-control studies, as they become available. This includes issues related to transition from a paediatric to adult environment for on-going follow-up.

6. Establish partnerships between providers and survivor/parent groups to disseminate information about PanCareSurFup to the general public, to health professionals and survivor/parent groups; train health care professionals through conferences, workshops, booklets and web based information; empower and educate survivors to be as informed as possible concerning their long-term risks, and about general and specific health promotion measures that they can use to optimise their future well-being.

More information about PanCareSurFup.