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Database for survivors of early childhood cancer required

A database of adult survivors of childhood cancer needs to be created, according to the National Cancer Control Programme (NCCP).

A health needs assessment for the group was recently conducted by Dr Peter Barrett, a Specialist Registrar in Public Health Medicine, and circulated to the NCCP executive committee, in advance of its meeting on 3 December 2018.

The needs assessment arises from recommendation 41 of the National Cancer Strategy 2017-2026 and was required as survivors of childhood cancer have a unique set of complex healthcare needs.

“The assessment was undertaken between January and July 2018. There is a need for a single database of survivors as it is not known how many are out there and the numbers are growing,” according to the minutes of the meeting, seen by the Medical Independent through Freedom of Information law.

“There is also a need for a unified EPR .”

The Director of the NCCP Dr Jerome Coffey thanked Dr Barrett for his work and the executive committee agreed that the “patient voice comes through clearly in the document”.

The minutes added: “For the development of a model of care it would be good to know the scale of numbers.”

The surveillance and risk management of people at increased risk of cancer was also discussed during the meeting.

A health needs assessment on managing inherited familial predisposition to cancer has been drafted by Dr Greg Martin, Specialist Register in Public Health Medicine and comments have been provided by Professor of Medicinal Genetics, Our Lady’s Children Hospital, Crumlin, Prof Andrew Green, and Consultant Medical Oncologist and Geneticist in St James’s Hospital, Dublin, Prof David Gallagher.

The aim of the project is to determine the resource requirements for the management and surveillance of common predisposition syndromes,” according to the minutes.

“It is hoped the survey of cancer centres will provide information on existing pathways and numbers being followed. A site visit to the N[orthern] Ireland service would be informative.”

The completed pilot for the hereditary cancer genetics services survey has been submitted to management in the Mater Misericordiae University Hospital (MMUH), Dublin, for review.

“Surveys will be circulated to all cancer centres as soon as the pilot in MMUH is complete. NCCP has identified contacts in the centres to follow up on survey results,” the minutes state.

The survey was expected to be completed by January 2019 and the results were to come before the Executive in February 2019 for consideration.

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