Keep Your Validated Instrument. Surround It With Real-World Data.
A validated instrument is too rigorous to throw away. Its real limit is cadence, not validity. The move is to keep it and add the continuous data that explains the score.
Forma Health Blog
Evidence-based writing for patient-advocacy leaders, academic PIs, and research operations teams. On ePRO, EMA, real-world evidence, patient registries, and the conditions we work with every day.
A validated instrument is too rigorous to throw away. Its real limit is cadence, not validity. The move is to keep it and add the continuous data that explains the score.
Patients document fewer than half of their seizures when you compare diaries against video-EEG. That's a problem for any epilepsy trial that uses a diary as its primary endpoint.
ePRO, EMA, and RWD get conflated in grant applications and protocols. They're related but distinct. Here's what each one means and how to write about them precisely.
Survey fatigue is the leading modifiable cause of registry dropout. It's fixable through design choices made at the protocol stage, not patient coaching.