Objective: To improve equitable access to participation in the EJS ACT-PD trial (Edmond J Safra Accelerating Clinical Trials in Parkinson’s Disease)

Background: A minority of people with Parkinson’s disease (PwPD) take part in clinical trials. Those that do are not representative of the PD population. Traditional in-clinic recruitment reduces patient-led self-referral and promotes clinician gate-keeping, thereby impacting access to research participation opportunities. There is a lack of knowledge about which recruitment activities best reach PwPD, or which PwPD are lost in the recruitment process. This prohibits timely intervention to improve recruitment practices.

Method: The EJS ACT-PD initiative has worked with its patient and public involvement working group, wider network and community advisory panel to develop a self-referral platform for the EJS ACT-PD trial that allows effective monitoring of recruitment. Learnings from a registration of interest (ROI) process employed by the OCTOPUS trial for Progressive Multiple Sclerosis have been integrated into its design.

Results: PwPD will register their interest online via an ROI portal managed by a PD research register. The ROI will check key eligibility criteria, allow PwPD to select preferred trial sites, collect contact details and demographic data (including age, sex, ethnicity, education, deprivation). Potentially eligible PwPD are assigned to a site within a Recruitment Management System (RMS) which supports a telephone screening log, further confirming eligibility and facilitating invitation to a screening visit. A ROI identifier will allow monitoring of successful randomisation. Automated data dashboards will report on key performance indicators (KPIs) against overall recruitment and inclusivity targets at three levels: the ROI, the RMS and for different trial promotion activities by site and for the overall trial. This will help identify successful recruitment strategies as well as barriers to recruitment of under-served groups. A trial Recruitment and Retention Panel will actively monitor inclusivity recruitment targets and plan recruitment interventions.

Conclusion: The EJS ACT-PD self-referral pathway has been designed to monitor trial recruitment, supporting active intervention to challenges as they occur.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/who-is-lost-monitoring-recruitment-in-the-ejs-act-pd-trial-to-improve-understanding-of-inclusive-recruitment/