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

NPJ Parkinsons Dis

Centre for Preventive Neurology, Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, UK.

Published: March 2024

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.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10950855PMC
http://dx.doi.org/10.1038/s41531-024-00651-zDOI Listing

Publication Analysis

Top Keywords

parkinson's disease
8
accesspd unique
8
accesspd
4
accesspd generation
4
generation registry
4
registry accelerate
4
accelerate parkinson's
4
disease recruitment
4
recruitment major
4
major rate-limiting
4

Similar Publications

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!