Cancer survivor perspectives on sharing patient-generated health data with central cancer registries.
Tenbroeck G SmithM E DunnK Y LevinS P TsakraklidesS A MitchellL V van de Poll-FranseK C WardC L WigginsX C WuM HurlbertN K AaronsonPublished in: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation (2019)
Our results suggest that registry-based collection of PGHD is acceptable to most cancer survivors and could facilitate registry-based efforts to collect PGHD/PROs. Central cancer registry-based collection of PGHD/PROs, especially on long-term effects, could enhance registry support of cancer control efforts including research and population health management.