O4 Research understands the unique challenges of working with this specific and vulnerable patient population and indeed the inherent recruitment challenges. We adopt a patient centric approach from the outset and focus on keeping the parent/guardian and patient study input beyond Standard Of Care requirements, to the absolute minimum. We often challenge pre-defined data needs of clients by determining how and when will this be used, and indeed if this will add any value to the study. Conversely, if we see an opportunity for obtaining valuable health economic related data then this this will be suggested at an early stage.
Developing trust, transparency and ease of understanding for children and parents/guardians is imperative. Therefore engaging with patient advocacy groups and organising focus groups enables sharing of best practice right from the formative planning stage. This ensures that we sensitively consider all stakeholders needs and expectations and promote a strong platform for patient recruitment and retention.