Objective: To examine the characteristics of subjects within the Fox Trial Finder (FTF) database.

Background: FTF is an online, patient driven database by which Parkinson’s disease (PD) and atypical parkinsonism (AP) patients, care partners, and self-identified controls may self-report health information in order to be matched for clinical research opportunities.

Method: De-identified participant information was obtained from FTF via The Michael J. Fox Foundation for Parkinson’s Research that was current as of June 05, 2018. Self-reported demographics, diagnosis, genetic status, motor and non-motor features, and treatment were analyzed in SPSS.

Results: The sample included 52,201 volunteers with a diagnosis of PD, 19,762 controls, 823 volunteers with AP and 299 caregivers. A family history of PD was reported by 93.14% of controls. PD registrants were primarily white (92.13%) and male (61.99%). The most prevalent motor symptom in the PD group was slowness (19.08%) and the most prevalent non-motor symptom was sleep disturbance (15.97%). AP were significantly more likely than PD registrants to report current or prior non-motor symptoms (p < .0001). “Wearing off” was the most common medication-induced side effect reported by PD (25.12%) volunteers, and approximately 24% of PD subjects reported at least 2 medication-induced side effects. Over 80% of registrants reported that they had not had surgical treatment for PD. Over 40% of PD volunteers have never been tested for genetic markers of PD, and less than 1% of subjects self-identify as having a genetic marker of PD.

Conclusion: FTF is a large database of participants interested in clinical research for PD and related disorders. Volunteers in FTF are overwhelmingly white, which is consistent with the majority of PD clinical research, and therefore multiple recruitment channels should be used in addition to FTF to enroll target cohorts in order to capture minorities and older age subjects. In PD subjects, complications of treatment were common and surgical treatment was underutilized. A large number of PD subjects have never had genetic testing and less than 1% self-report their genetic status. Lastly, over 90% of control subjects report a family history of PD. These individuals may be at increased risk for PD and therefore warrant careful consideration prior to enrollment in clinical trials.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/self-reported-demographic-genetic-symptom-and-treatment-data-of-subjects-in-the-fox-trial-finder/