Advanced therapy medicinal products (ATMPs) are of great interest for the treatment of Parkinson’s disease (PD). Numerous cell- and gene-based therapies are currently undergoing clinical trials in this setting. Emma Lane, PhD, Cardiff University, Cardiff, UK, explains the work being done to understand both the participant’s and their support network’s experience within these clinical trials. The LEARN study conducted retrospective interviews with participants from the intraputamenal GDNF and the TRANSEURO dopamine cell replacement trials and their family members/care partners. The results showed a majority of positive experiences with participants very aware of the trial processes. The study also found that, with long trials, it was important to make participants aware of the processes they may go through at the end of the trial. This was because the end of the trial experience was flagged as a difficult one due to the loss of close interaction with healthcare professionals. Another point from the trials was that some patients and their support networks found brain imaging assessments and the assessment of motor function without medication difficult. This study was important as the collective experience is critical to better designing later trials and providing better information for the patient to ensure good study retention. This interview took place at the AD/PD™ 2023 congress in Gothenburg, Sweden.

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