Retaining Patients For 13+ Years In DIAD Research

When participant retention is measured in years rather than months, traditional site-based research models can become increasingly difficult to sustain. As visit schedules accumulate and care needs evolve, maintaining engagement requires approaches that adapt to participants rather than expecting participants to adapt to the study.

In research involving Dominantly Inherited Alzheimer's Disease (DIAD), long-term participation is essential for understanding disease progression and evaluating therapeutic interventions. Home-based clinical visits offer a practical way to reduce the burden associated with frequent travel while supporting continuity throughout lengthy studies. By bringing research activities directly to participants and fostering consistent clinician relationships over time, study teams can help preserve engagement, improve accessibility, and support protocol adherence across diverse geographic regions.

The experience from a multi-country DIAD study demonstrates how patient-centered flexibility can make long-term participation feasible, even in studies spanning more than a decade. For sponsors seeking to strengthen retention strategies, the findings underscore the importance of combining access, continuity, and personalized support to protect study outcomes and maximize the value of longitudinal research.