AccessPD as a next generation registry to accelerate Parkinson's disease research

Yun-Hsuan Chang; Maria Teresa Periñan; Matt Wilson; Alastair J Noyce

doi:10.1038/s41531-024-00651-z

AccessPD as a next generation registry to accelerate Parkinson's disease research

NPJ Parkinsons Dis. 2024 Mar 19;10(1):66. doi: 10.1038/s41531-024-00651-z.

Authors

Yun-Hsuan Chang¹, Maria Teresa Periñan^{2

3}, Matt Wilson¹, Alastair J Noyce⁴

Affiliations

¹ UMEDEOR LTD, 8 Warner Yard, London, EC1R 5EY, UK.
² Unidad de Trastornos del Movimiento, Servicio de Neurología y Neurofisiología Clínica, Instituto de Biomedicina de Sevilla, Hospital Universitario Virgen del Rocío/Consejo Superior de Investigaciones Científicas (CSIC)/Universidad de Sevilla, 41013, Seville, Spain.
³ Centre for Preventive Neurology, Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, UK.
⁴ Centre for Preventive Neurology, Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, UK. a.noyce@qmul.ac.uk.

Abstract

Recruitment is a major rate-limiting factor in Parkinson's disease (PD) research. AccessPD is a unique platform that aims to create a registry of more than 2000 PD patients and a rich database of PD-relevant information. Potential participants are identified using electronic health records (EHRs) in primary care. They are contacted via text message with an individualized link to the study portal. Electronic patient-reported outcomes (ePRO) are collected via online questionnaires and integrated with existing EHR. 200 participants were recruited within the first 6 months, of which 191 answered the follow-up questionnaire. Here, to showcase the potential of AccessPD, we described the most common diagnoses before and after PD diagnosis, the most commonly prescribed drugs, and identified participants who could benefit from device-aided therapies using consensus criteria. AccessPD shows its unique ability to link different data sources for patient stratification in longitudinal studies and recruitment into clinical trials.