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How Reliable Is Self-reported Data?

User on Fox Insight Webpage

Through online and smartphone studies, technology is allowing more people to participate in research. But how confident can researchers be in the data users input themselves?

Findings from a University of Rochester study supported by The Michael J. Fox Foundation are lending confidence to self-reported data around difficult-to-diagnose atypical parkinsonisms. These diseases — which include Lewy body dementia, multiple system atrophy and progressive supranuclear palsy — share symptoms with Parkinson’s disease but have important clinical and biological distinctions.

The study results, published in Neurology Clinical Practice, show agreement between participants’ self-reported diagnosis of these conditions in our online study matching tool Fox Trial Finder and clinicians’ diagnosis from a remote video visit.

Forty-four participants completed a visit with a remote evaluator who was blinded to the participant's self-reported diagnosis. The investigator conducted an interview and assessed motor function; the visit was recorded. Following the visit, the investigator selected the most likely diagnosis. The recorded visit was reviewed by a second blinded investigator who also selected the most likely diagnosis.

Investigators agreed with self-reported diagnoses in 82 percent of participants. This confirmation of self-reported data is important as more online studies arise.

Another goal of the study was to assess the potential of video research visits for a population that may have travel challenges. More than 90 percent of participants were satisfied or very satisfied with the convenience, comfort, and overall visit.

The researchers wrote in their paper: “These visits represent a promising option for reducing burden and extending the reach of clinical research to individuals with these rare and disabling conditions.”

These findings build on a previous study from some of the same investigators that showed even greater concordance with a Parkinson’s diagnosis. Through video visits with 166 people who self-reported a Parkinson’s diagnosis in Fox Trial Finder, clinicians agreed with that assessment in 97 percent of cases.

Interested in joining online and in-person research studies? Visit Fox Trial Finder to browse recruiting studies.

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