Delphi Study to Develop a Set of Recommendations for Patient-Reported Measures Implementation in Clinical Registries Worldwide - Survey
Starting date: January 1st 2025
Understanding Patient-Reported Outcome Measures Implementation in Clinical Registries Worldwide – Interview
Rasa Ruseckaite, Randi Thisakya Jayasinghe, Monash University
Background
The collection of patient-reported outcomes measures (PROMs) is becoming common in clinical registries worldwide. It has been discovered that implementing PROMs in clinical registries is complex and challenging.
This research study is conducted by a student as a part of a PhD project to investigate the implementation of PROMs in clinical registries. To our knowledge, no evidence-based guidelines or recommendations have been developed up-to-date to guide the effective implementation of PROMs in clinical registries globally. We identified one set of recommendations for PROMs inclusion in clinical registries in Australia [https://link.springer.com/article/10.1186/s12913-022-07657-4].
Aim
This study aims to determine the applicability of already developed recommendations on PROMs inclusion in clinical registries in Australia to the international setting and to gain an understanding of current practices, barriers and enablers for implementing PROMs in clinical registries. The overarching aim of our project is to develop an international set of guidelines for PROMs inclusion in clinical registries.