Many European cancer registries also adhered to the HR studies on a voluntary basis, adding new cases to the existent breast and colorectal cohorts, and consenting to enlarge the HIGHCARE cohorts and to establish three additional population-based cohorts of patients diagnosed with skin melanoma, non-Hodgkin lymphoma, and lung cancer.
Each cancer registry is recruiting a sample of at least 500 lung cancers cases, 300 skin melanoma and 200 Diffuse and Large B-cell lymphoma cases. As in the HIGHCARE studies, the information on stage, diagnostic exams, morphology and bio-molecular subtype, treatment, co-morbidity and follow-up has to be abstracted from clinical records according to the agreed site/specific study protocols.
The same submission modalities, data management, quality check procedures and study organization as those implemented for the HIGHCARE project are also adopted for these HR studies.
The list of cancer specific variables is included in the detailed protocol, divided in mandatory and optional.
These current HR activities are connected and integrated with the Cancer Joint Action “Innovative Partnership for Action Against Cancer - iPAAC” started in April 2018,
with the participation of 24 EU countries.
iPAAC is structured in 10 WPs, Italy leads the WP7, whose general objective is to enhance population-based cancer information systems to better support
evidence-based comprehensive cancer care, with a focus on patterns of care, but also on costs of care and survivorship.
In order to achieve an agreement on the best data sources and procedures to advance the current registries datasets, pilot studies on colorectal and pancreatic cancers, and skin melanoma will be performed.