Analysis and validation of a Parkinson’s disease register as a recruitment tool for clinical studies

Promotion of research is a key strategy of the National Health Service (NHS). Currently, many patients are not afforded the opportunity to participate in clinical studies. A register of research-interested patients has the potential to maximise inclusivity. We have established a register of research-interested patients with Parkinson's disease within the South West of England, with pragmatic inclusion criteria and multiple recruitment routes. We undertook an analysis of the register, investigation of its utility as a recruitment tool and a survey of recruiters. There were 529 active participants; 30% were self-referred and 70% were recruited by a healthcare practitioner. Response rate to annual questionnaires was 86.5%. Staff time required for pack preparation, recruitment and data entry was 15 min per new recruit and 5 min per follow-up questionnaire. In total, 85% of recruiters viewed the register positively. A single mailing to participants resulted in a recruitment rate that significantly exceeded that achieved by traditional recruitment methods.