Topic: Data

“Questions and Answers on the European Health Data Space” (EHDS)

ELIXIR – European life sciences infrastructure

Scientific paper – “Decision Support Systems in Oncology”

Presentation – Health-Related Quality of Life (HRQoL) and Patient-Reported Outcome Measures (PROMs) in oncology

ESO podcast – Health-Related Quality of Life (HRQoL) and Patient-Reported Outcome Measures (PROMs) in oncology

EORTC questionnaires to assess quality of life (QOL) in cancer patients and survivors

Cancer Registry of Norway

Systematic review of physical function patient-reported outcomes (PROMs) among adolescent and young adult (AYA) cancer survivors

Report – Quality of care as perceived by patients. PROMs and PREMs indicators

European Cancer Organisation (ECO) policy action report – “Time to Accelerate: The Use of Patient-Reported Outcome Measures in European Oncology”

IARC/GICR cancer registration e-learning series

Website – European Network of Cancer Registries (ENCR)

iPAAC Framework for the implementation of Patient Reported Outcome Measures (PROMs) in routine cancer care

Example of a Hospital-Based Cancer Registry

IARC Technical Publication on Planning and Developing Population-Based Cancer Registration

ENCR (European Network of Cancer Registries) Recommendations 2023 on Standard Dataset

Review article on best practices for developing a Data Management Plan (DMP) in clinical studies

Vall d’Hebron Research Institute Strategic Plan 2021-2025

iPAAC – Mapping data sources available for linkage with registry data

Overview of European Network of Cancer Registries (ENCR) recommendations