AccessPD as a next generation registry to accelerate Parkinson's disease research.
Yun-Hsuan ChangMaria Teresa PeriñanMatt WilsonAlastair J NoycePublished in: NPJ Parkinson's disease (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.
Keyphrases
- electronic health record
- patient reported outcomes
- primary care
- clinical trial
- end stage renal disease
- adverse drug
- clinical decision support
- ejection fraction
- newly diagnosed
- health information
- peritoneal dialysis
- prognostic factors
- drinking water
- emergency department
- case report
- healthcare
- clinical practice
- big data
- high throughput
- climate change
- double blind