To describe the baseline characteristics of a national virtual cohort of LRRK2 G2019S carriers with and without self-reported Parkinson's disease (PD) recruited from a personal genomics company.
To pilot a novel community-driven brain health (BH) workshop series to bolster neurologic health literacy and self-efficacy in Rochester's historically marginalized communities.
To recruit and characterize a national cohort of individuals who have a genetic variant (LRRK2 G2019S) that increases risk of Parkinson disease (PD), assess participant satisfaction with a decentralized, remote research model, and evaluate interest in future clinical trials.In partnership with 23andMe, Inc., a personal genetics company, LRRK2 G2019S carriers with and without PD were recruited to participate in an ongoing 36-month decentralized, remote natural history study. We examined concordance between self-reported and clinician-determined PD diagnosis. We applied the Movement Disorder Society Prodromal Parkinson's Disease Criteria and asked investigators to identify concern for parkinsonism to distinguish participants with probable prodromal PD. We compared baseline characteristics of LRRK2 G2019S carriers with PD, with prodromal PD, and without PD.Over 15 months, we enrolled 277 LRRK2 G2019S carriers from 34 states. At baseline, 60 had self-reported PD (mean [SD] age 67.8 years [8.4], 98% White, 52% female, 80% Ashkenazi Jewish, and 67% with a family history of PD), and 217 did not (mean [SD] age 53.7 years [15.1], 95% White, 59% female, 73% Ashkenazi Jewish, and 57% with a family history of PD). Agreement between self-reported and clinician-determined PD status was excellent (κ = 0.94, 95% confidence interval 0.89-0.99). Twenty-four participants had prodromal PD; 9 met criteria for probable prodromal PD and investigators identified concern for parkinsonism in 20 cases. Compared with those without prodromal PD, participants with prodromal PD were older (63.9 years [9.0] vs 51.9 years [15.1], p < 0.001), had higher modified Movement Disorders Society-Unified Parkinson's Disease Rating Scale motor scores (5.7 [4.3] vs 0.8 [2.1], p < 0.001), and had higher Scale for Outcomes in PD for Autonomic Symptoms scores (11.5 [6.2] vs 6.9 [5.7], p = 0.002). Two-thirds of participants enrolled were new to research, 97% were satisfied with the overall study, and 94% of those without PD would participate in future preventive clinical trials.An entirely remote national cohort of LRRK2 G2019S carriers was recruited from a single site. This study will prospectively characterize a large LRRK2 G2019S cohort, refine a new model of clinical research, and engage new research participants willing to participate in future therapeutic trials.
Objective To determine the effect of a Best Practice Advisory (BPA) on the ordering and administration of contraindicated dopamine blocking agents (DBA) to hospitalized patients with Parkinson’s disease (PD) and related disorders. Background Patients with PD are more likely to require hospitalization and are at increased risk of complications. Administration of contraindicated DBA contributes to worsened outcomes in this patient population. Electronic medical record (EMR) warnings (also referred to as BPA) have been proposed as a way to prevent the administration of contraindicated medications. Methods A BPA was launched in January 2020 within the University of Rochester EMR system, which alerts the provider when a contraindicated DBA is ordered in hospitalized patients with PD and related disorders. Patients with PD and related disorders hospitalized at two hospitals affiliated to the University of Rochester during a time period before ( t1 : 1/1/2019–1/1/2020) and after ( t2 : 1/8/2020–1/8/2021) the implementation of the BPA were included in this study. Epic SliderDicer was used to collect the data from the University of Rochester EMR. The number of patients who had contraindicated DBA orders and administrations in both time periods, and the number of patients who had the BPA triggered during t2 were obtained. We compared the results before and after the implementation of the BPA. Results 306 patients with PD and related disorders were hospitalized during t1 and 273 during t2 . There was significantly less percentage of patients who had contraindicated DBA orders (41.5% in t1 vs. 17.6% in t2 ) and patients who had contraindicated DBA administrations (16% in t1 vs. 8.8% in t2 ) during t2 ( p < 0.05 for both comparisons). There was no significant difference between the percentage of patients who had contraindicated DBA orders in t1 and patients with attempted orders (BPA triggered) in t2 ( p = 0.27). Conclusion The results of this study increase the evidence of the potential benefit of EMR warnings for the optimization of inpatient medication management in patients with PD and related disorders. In particular, our results suggest that EMR warnings help reduce the administration of contraindicated medications, which is a known contributing factor for hospital complications in this patient population.
Digital health technologies are growing at a rapid pace and changing the healthcare landscape. Our current understanding of digital health literacy in Parkinson’s disease (PD) is limited. In this review, we discuss the potential challenges of low digital health literacy in PD with particular attention to telehealth, deep brain stimulation, wearable sensors, and smartphone applications. We also highlight inequities in access to digital health technologies. Future research is needed to better understand digital health literacy among individuals with PD and to develop effective solutions. We must invest resources to evaluate, understand, and enhance digital health literacy for individuals with PD.
In a prospective, remote natural history study of 277 individuals with (60) and genetically at risk for (217) Parkinson's disease (PD), we examined interest in the return of individual research results (IRRs) and compared characteristics of those who opted for versus against the return of IRRs. Most (
