There is no dedicated national registry for oncology patients receiving new cancer therapies.
The National Cancer Registry Ireland (NCRI) collects, classifies, and analyses data on cancer incidence and prevalence across the country. It tracks newly diagnosed cancer cases and related tumours, including some subsequent tumours if they meet registration criteria. However, its focus is primarily on initial diagnoses and does not comprehensively track relapses or long-term treatment outcomes, including newer therapies.
In terms of the reimbursement of medicines, the HSE has advised it is committed to providing access to as many medicines as possible, in as timely a fashion as possible, from the resources available to it.
The HSE robustly assesses applications for pricing and reimbursement to make sure that it can stretch available resources as far as possible and to deliver the best value in relation to each medicine and ultimately more medicines to Irish citizens and patients. HSE decisions on which medicines are reimbursed by the taxpayer are made on objective, scientific and economic grounds. There are formal processes which govern applications for the pricing and reimbursement of medicines, and new uses of existing medicines, to be funded and / or reimbursed.
The first step in the process is the submission of a Rapid Review dossier (a clinical and economic dossier) to the National Centre for Pharmacoeconomics (NCPE) for assessment. The NCPE may advise that a full Health Technology Assessment (HTA) is recommended, which would then be commissioned by the HSE as per the agreed processes.
The NCPE uses a decision framework to systematically assess whether a technology is cost-effective. This includes clinical effectiveness and health related quality-of-life benefits, which the new treatment may provide and whether the cost requested by the pharmaceutical company is justified.
Following the recommendation from the NCPE, the HSE examines all the evidence which may be relevant for the decision; the final decision on reimbursement is made by the HSE. In the case of cancer drugs, the NCPE recommendation is also considered by the National Cancer Control Programme (NCCP) Technology Review Group.