PanCareSurFup

PanCareSurFup was a six year project, funded through the 7th Framework Programme (FP7) of the European Commission. The Boyne Research Institute was a participant in this 16-member consortium representing 12 European countries that ran from 1 February 2011 to 31 January 2017. Dr. Byrne was Research Liaison in this consortium. The Boyne Research Institute was represented in 7 work packages of PanCareSurFup; Dr. Byrne was the deputy leader of WP7, which was the dissemination and training work package. As part of the dissemination activities of PanCareSurFup, the Boyne Research Institute participated in the following activities:
  • The first Irish Conference on Survivorship after Cancer during Childhood and Adolescence, in association with the Irish Cancer Society, took place in Dublin in November 2011. For more information about the event please contact the Boyne Research Institute or view our newsletter here.
  • The second 'Race of Brave Bikers' took place in April 2013 in Marostica, Italy. This event was part of the dissemination work package for PanCareSurFup. To read more about this, view our newsletter here.
  • The Boyne Research Institute hosted the biannual meeting of PanCareSurFup in Dublin in May 2015 where discussion centered around the accrual of data into the data-intense work packages. Since the consortium encountered numerous problems in acquiring the data in many countries delays were reasonable. However a one-year extension was necessary to conclude the project. The Ethical and Scientific Advisory Board presented their view, generally positive, on the progress of the consortium. To read more about this, view our newsletter here.
  • The Boyne Research Institute’s Dr. Byrne and research assistant Niamh Corbett helped organise The PanCareSurFup Acting Now! European Conference which was held in Brussels in May 2016. The conference was attended by survivors from across Europe who shared their experiences with health professionals, researchers and policy makers. For more information visit pancaresurfup and listen to some of the presentations here

Objectives of PanCareSurFup

  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 will 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: specifically, cancers of 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 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.