Patient Caregiver Network Improves Post-Seizure Trial Data

A pharmaceutical contract research organization (CRO) raised concerns regarding the timing and accessibility of seizure diaries for participants enrolled in their rare disease study. They sought clarification on the optimal timing for prompting patients to complete these diaries and explored strategies to enhance the process, aiming to better accommodate both caregivers' and patients' requirements, thereby improving the quality of trial data generated.

Medable utilized its Patient Community Network (PCN) to gather insights from three families affected by the disease and its associated seizures. Through this outreach, Medable discovered that the optimal time for patients to complete seizure diaries was approximately one hour post-seizure. They recommended the client provide a gentle reminder to participants accordingly. This timing would allow caregivers to tend to their child's immediate needs and offer a crucial period of rest and reflection before diary completion.

Learn more about the positive impact Medable was able to make on this study protocol by downloading the case study below.