Mitigating the impact of study-start delays in clinical trials for rare disorders : insights and lessons from a PKAN trial
Background: Rare disease clinical trials are notorious for complexities that frequently result in study-start delays. However, there is limited knowledge about how participants and researchers perceive these delays and what factors shape their experiences. A clinical trial in the rare, progressive disorder Pantothenate Kinase-Associated Neurodegeneration—the PKAN trial—encountered an unexpected de
