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The Irish Childhood Cancer Survivorship Project

To coincide with Child Cancer Awareness Month, we spoke to Dr Michael Capra, Paediatric Oncologists at Children’s Health Ireland (CHI) at Crumlin, and Trinity Senior Clinical Lecturer (Paediatrics). Dr Capra’s research focuses on the crucial issue of cancer survivorship. With survival rates for childhood cancer approaching 80%, survivors frequently deal with a myriad of medical problems as they grow older and have a higher-than-normal risk of premature death. Early detection and intervention of the side-effects of childhood cancers, as well as the long-term effects of the disease, are critical to improving patient outcomes. Furthermore, transitioning from paediatric medicine to adult care is challenging for patients who have already gone through so much. Despite the clear clinical needs, there has traditionally been no population-based data on the numbers of childhood cancer survivors in Ireland, nor are there figures for cancer- or treatment-related effects. This lack of data is arguably the greatest limiting factor to the development of a world class national service in Ireland for survivors of childhood cancer.

In fact, the service deficits have been recognised at governmental level with the Department of Health’s National Cancer Strategy (2017-2016) committing to addressing these gaps. Service planners and those delivering care to survivors are now challenged to develop and provide a world class comprehensive survivorship service informed by a robust research infrastructure. To address these needs, Dr Capra’s group at CHI at Crumlin, in collaboration with Trinity College Dublin, are designing an electronic Irish childhood cancer survivorship database, and it is currently nearing completion. Dr Capra described the ambitious, large-scale project:

The over-arching aim of this project is to facilitate the development of a national clinical survivorship service for all survivors of childhood cancer, while at the same time establishing a longitudinal survivorship research infrastructure.”

The resultant data will help generate a Treatment Summary/Survivorship Passport which can be given to cancer survivors to facilitate their transition on the difficult graduation from paediatric to adult care. The aim is that the survivorship passport will be electronically available to survivors and health care professionals - possibly through the proposed National Clinical Information System (NCIS) of the National Cancer Control Programme (NCCP) or an alternative platform. The database will provide infrastructure to facilitate research on Irish childhood cancer survivorship to ultimately deliver quality patient-centred care, improve survival, and increase quality of life.

Dr Capra described the impact on patient care:

This database will allow for effective transitioning from paediatric to adult care by use of a survivorship passport. It will facilitate data analysis to assist the construction of a robust national survivorship service

for childhood cancer survivors. Crucially it will provide future research opportunities to improve current treatments, minimise late side-effects, and provide opportunities for accurate screening and surveillance.”

Dr Katherine Gavin is the project manager of the survivorship project. The work is currently funded by the Children’s Health Foundation. Discussions are currently underway with the Irish Cancer Society to further collaborate on this project.

September is Childhood Cancer Awareness Month, and more information can be accessed at the Irish cancer Society website: