Disease progression is very different between Parkinson's patients in research studies and those in the real world

Studying the progression of Parkinson's disease (PD) in real-world settings can help design better clinical trials and identify specific patient groups. Recent improvements in data collection and analysis allow for a more detailed comparison of research and real-world PD patients. This study looked at two research groups and two real-world groups. The research groups were the Harvard Biomarkers Study (HBS) with 935 participants and Fox Insights with 36,660 participants. The real-world groups included 157,475 patients from Optum’s health records and 22,949 patients from Mass General Brigham (MGB). Key findings include: PD progresses faster in real-world settings (MGB) compared to research settings (HBS). Real-world patients are diagnosed with PD about 11 years later than research patients. Treatment for PD starts on average 2.3 years later in real-world patients. The study highlights that differences in patient groups between research and real-world settings can affect the understanding of PD progression. Using various data sources and considering potential biases can improve future PD studies and help develop effective treatments.