Category: Huntington's Disease
Objective: To explore common reasons for participant attrition and recruitment barriers in observational studies in people affected by movement disorders.To explore common reasons for participant attrition and recruitment barriers in observational studies in people affected by movement disorders.
Background: Research participation can be challenging for people suffering from neurological and neurodegenerative conditions, such as movement disorders, creating recruitment barriers and attrition due to factors such as progressive symptoms (e.g. mood and behavioural changes), caregiver burden, and logistical challenges. Identifying and addressing these barriers, and preventing attrition, is essential to improve study feasibility and recruiting representative cohorts, ultimately providing real-world participant cohorts essential in studying treatment effects.
Method: We analysed anonymous national research survey for several studies at King’s College London recruiting participants with neurological and neurodegenerative conditions, such as Parkinson’s (PD) and Huntington’s disease (HD). Reasons for withdrawal were analysed and summarised into main themes describing reasons for attrition and issues around recruitment. In addition, strategies to improve recruitment and retention were explored.
Results: Across several studies with participants with PD and HD, we identified the following main themes for withdrawal: a) worsening of disease symptoms, b) presence and/or worsening of other health issues, c) difficulties travelling to study visits, and d) technical issues, in particular in neuroimaging studies. Solutions to overcome these barriers, which have been successfully implemented in some of the studies run at King’s College London included: a) offering financial incentives, b) providing support for carers, and c) offering flexible visit times and dates. In relation to symptom worsening as a reason for withdrawal, effective solutions included additional breaks during study visits, arranging travel beforehand, and supporting companion visit attendance, where feasible.
Conclusion: The identification of withdrawal patterns and real-time evaluation of participant feedback supports the implementation of targeted, practical adaptations addressing specific and disability-related barriers. These strategies may support participant retention and continued interest in research.
To cite this abstract in AMA style:
M. Hartmann, A. Rangel Cristales, C. Madrigal Esquivel, N. Martin, O. Makos, J. Staunton, P. Tall, D. van Wamelen. Strategies for Participant Retainment in Large Observational Studies in Movement Disorders: a Single Centre Experience [abstract]. Mov Disord. 2026; 41 (suppl 1). https://www.mdsabstracts.org/abstract/strategies-for-participant-retainment-in-large-observational-studies-in-movement-disorders-a-single-centre-experience/. Accessed October 1, 2026.« Back to 2026 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/strategies-for-participant-retainment-in-large-observational-studies-in-movement-disorders-a-single-centre-experience/