scholarly journals Fox Insight collects online, longitudinal patient-reported outcomes and genetic data on Parkinson’s disease

2020 ◽  
Vol 7 (1) ◽  
Author(s):  
Luba Smolensky ◽  
◽  
Ninad Amondikar ◽  
Karen Crawford ◽  
Scott Neu ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Patient Reported Outcomes ◽  
Genetic Data ◽  
Patient Reported

scholarly journals Fox Insight Collects Online, Longitudinal Patient-Reported Outcomes and Genetic Data on Parkinson’s disease

2019 ◽  
Author(s):  
Luba Smolensky ◽  
Ninad Amondikar ◽  
Karen Crawford ◽  
Scott Neu ◽  
Catherine M. Kopil ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Patient Reported Outcomes ◽  
Genetic Data ◽  
Health Study ◽  
Nucleotide Polymorphisms ◽  
Data Set ◽  
Institutional Review ◽  
Patient Reported ◽  
Rich Data

AbstractFox Insight is an online, longitudinal health study of people with and without Parkinson’s disease with targeted enrollment set to at least 125,000 individuals. Fox Insight data is a rich data set facilitating discovery, validation, and reproducibility in Parkinson’s disease research. The dataset is generated through routine longitudinal assessments (health and medical questionnaires evaluated at regular cycles), one-time questionnaires about environmental exposure and healthcare preferences, and genetic data collection.Qualified Researchers can explore, analyze, and download patient-reported outcomes (PROs) data and Parkinson’s disease-related genetic variants at https://foxden.michaeljfox.org. The full Fox Insight genetic data set, including approximately 600,000 single nucleotide polymorphisms (SNPs), can be requested separately with institutional review and are described outside of this data descriptor.Fox Insight is sponsored by The Michael J. Fox Foundation for Parkinson’s Research.

scholarly journals A randomized controlled trial of patient‐reported outcomes with tai chi exercise in Parkinson's disease

2013 ◽  
Vol 29 (4) ◽  
pp. 539-545 ◽  
Author(s):  
Fuzhong Li ◽  
Peter Harmer ◽  
Yu Liu ◽  
Elizabeth Eckstrom ◽  
Kathleen Fitzgerald ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Randomized Controlled Trial ◽  
Patient Reported Outcomes ◽  
Tai Chi ◽  
Controlled Trial ◽  
Randomized Controlled ◽  
Patient Reported ◽  
Tai Chi Exercise

Feasibility, Reliability, and Value of Remote Video-Based Trial Visits in Parkinson’s Disease

2020 ◽  
Vol 10 (4) ◽  
pp. 1779-1786
Author(s):  
Christopher G. Tarolli ◽  
Kelly Andrzejewski ◽  
Grace A. Zimmerman ◽  
Michael Bull ◽  
Steven Goldenthal ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Clinical Trial ◽  
Parkinson's Disease ◽  
Patient Reported Outcomes ◽  
Phase Iii ◽  
Moderate Correlation ◽  
Excellent Correlation ◽  
Phase Iii Clinical Trial ◽  
Patient Reported ◽  
One Year

Background: There is rising interest in remote clinical trial assessments, particularly in the setting of the COVID-19 pandemic. Objective: To demonstrate the feasibility, reliability, and value of remote visits in a phase III clinical trial of individuals with Parkinson’s disease. Methods: We invited individuals with Parkinson’s disease enrolled in a phase III clinical trial (STEADY-PD III) to enroll in a sub-study of remote video-based visits. Participants completed three remote visits over one year within four weeks of an in-person visit and completed assessments performed during the remote visit. We evaluated the ability to complete scheduled assessments remotely; agreement between remote and in-person outcome measures; and opinions of remote visits. Results: We enrolled 40 participants (mean (SD) age 64.3 (10.4), 29% women), and 38 (95%) completed all remote visits. There was excellent correlation (ICC 0.81–0.87) between remote and in-person patient-reported outcomes, and moderate correlation (ICC 0.43–0.51) between remote and in-person motor assessments. On average, remote visits took around one quarter of the time of in-person visits (54 vs 190 minutes). Nearly all participants liked remote visits, and three-quarters said they would be more likely to participate in future trials if some visits could be conducted remotely. Conclusion: Remote visits are feasible and reliable in a phase III clinical trial of individuals with early, untreated Parkinson’s disease. These visits are shorter, reduce participant burden, and enable safe conduct of research visits, which is especially important in the COVID-19 pandemic.

scholarly journals Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression

2017 ◽  
Vol 2017 ◽  
pp. 1-9 ◽  
Author(s):  
Laurie K. Mischley ◽  
Richard C. Lau ◽  
Rachel D. Bennett
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Fruits And Vegetables ◽  
Coconut Oil ◽  
Nutritional Supplements ◽  
Primary Outcome Measure ◽  
Cross Sectional ◽  
Fresh Vegetables ◽  
Patient Reported ◽  
Reduced Rate

Objectives. The goal of this study is to describe modifiable lifestyle variables associated with reduced rate of Parkinson’s disease (PD) progression.Methods. The patient-reported outcomes in PD (PRO-PD) were used as the primary outcome measure, and a food frequency questionnaire (FFQ) was used to assess dietary intake. In this cross-sectional analysis, regression analysis was performed on baseline data to identify the nutritional and pharmacological interventions associated with the rate of PD progression. All analyses were adjusted for age, gender, and years since diagnosis.Results. 1053 individuals with self-reported idiopathic PD were available for analysis. Foods associated with the reduced rate of PD progression included fresh vegetables, fresh fruit, nuts and seeds, nonfried fish, olive oil, wine, coconut oil, fresh herbs, and spices (P<0.05). Foods associated with more rapid PD progression include canned fruits and vegetables, diet and nondiet soda, fried foods, beef, ice cream, yogurt, and cheese (P<0.05). Nutritional supplements coenzyme Q10 and fish oil were associated with reduced PD progression (P=0.026andP=0.019, resp.), and iron supplementation was associated with faster progression (P=0.022).Discussion. These are the first data to provide evidence that targeted nutrition is associated with the rate of PD progression.

scholarly journals Gene4PD: A Comprehensive Genetic Database of Parkinson’s Disease

2021 ◽  
Vol 15 ◽  
Author(s):  
Bin Li ◽  
Guihu Zhao ◽  
Qiao Zhou ◽  
Yali Xie ◽  
Zheng Wang ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Neurodegenerative Disorder ◽  
Late Onset ◽  
Association Studies ◽  
Age At Onset ◽  
Genetic Data ◽  
Genome Wide Association Studies ◽  
Onset Age ◽  
Loss Of Function

Parkinson’s disease (PD) is a complex neurodegenerative disorder with a strong genetic component. A growing number of variants and genes have been reported to be associated with PD; however, there is no database that integrate different type of genetic data, and support analyzing of PD-associated genes (PAGs). By systematic review and curation of multiple lines of public studies, we integrate multiple layers of genetic data (rare variants and copy-number variants identified from patients with PD, associated variants identified from genome-wide association studies, differentially expressed genes, and differential DNA methylation genes) and age at onset in PD. We integrated five layers of genetic data (8302 terms) with different levels of evidences from more than 3,000 studies and prioritized 124 PAGs with strong or suggestive evidences. These PAGs were identified to be significantly interacted with each other and formed an interconnected functional network enriched in several functional pathways involved in PD, suggesting these genes may contribute to the pathogenesis of PD. Furthermore, we identified 10 genes were associated with a juvenile-onset (age ≤ 30 years), 11 genes were associated with an early-onset (age of 30–50 years), whereas another 10 genes were associated with a late-onset (age &gt; 50 years). Notably, the AAOs of patients with loss of function variants in five genes were significantly lower than that of patients with deleterious missense variants, while patients with VPS13C (P = 0.01) was opposite. Finally, we developed an online database named Gene4PD (http://genemed.tech/gene4pd) which integrated published genetic data in PD, the PAGs, and 63 popular genomic data sources, as well as an online pipeline for prioritize risk variants in PD. In conclusion, Gene4PD provides researchers and clinicians comprehensive genetic knowledge and analytic platform for PD, and would also improve the understanding of pathogenesis in PD.

scholarly journals Synergy of pandemics-social isolation is associated with worsened Parkinson severity and quality of life

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Indu Subramanian ◽  
Joshua Farahnik ◽  
Laurie K. Mischley
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Social Isolation ◽  
Support Groups ◽  
Symptom Severity ◽  
Social Performance ◽  
Social Distancing ◽  
Patient Reported

Abstract Social isolation and its deleterious effects on health increases with age in the general population. People with Parkinson’s Disease (PWP) are no exception. Social isolation is a risk factor for worsened health outcomes and increased mortality. Symptoms such as depression and sleep dysfunction are adversely affected by loneliness. There is a paucity of research on social isolation in Parkinson’s disease (PD), which is all the more critical now in the setting of social distancing due to COVID-19. The goal of this study was to survey individuals with PD to evaluate whether social isolation is associated with PD symptom severity and quality of life. Only individuals reporting a diagnosis of idiopathic PD were included in this analysis. The primary outcome measures were the Patient-Reported Outcomes in PD (PRO-PD) and questions from PROMIS Global related to social health. PRO-PD scores increased as social performance and social satisfaction scores diminished. Individuals who reported being lonely experienced a 55% greater symptom severity than those who were not lonely (P < 0.01). Individuals who documented having a lot of friends had 21% fewer symptoms than those with few or no friends (P < 0.01). Social isolation was associated with greater patient-reported PD severity and lower quality of life, although it is unclear whether this is the cause and/or a consequence of the disease. In essence, the Parkinson pandemic and the pandemic of social isolation have been further compounded by the recent COVID-19 pandemic. The results emphasize the need to keep PWP socially connected and prevent loneliness in this time of social distancing. Proactive use of virtual modalities for support groups and social prescribing should be explored.

scholarly journals Predictors of second-sided deep brain stimulation for Parkinson’s disease

2020 ◽  
pp. 1-7
Author(s):  
Joshua L. Golubovsky ◽  
Hong Li ◽  
Arbaz Momin ◽  
Jianning Shao ◽  
Maxwell Y. Lee ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Deep Brain Stimulation ◽  
Brain Stimulation ◽  
Rating Scale ◽  
Intraoperative Complications ◽  
Cohort Analysis ◽  
Initial Surgery ◽  
Patient Reported ◽  
Deep Brain

OBJECTIVEParkinson’s disease (PD) is a progressive neurological movement disorder that is commonly treated with deep brain stimulation (DBS) surgery in advanced stages. The purpose of this study was to investigate factors that affect time to placement of a second-sided DBS lead for PD when a unilateral lead is initially placed for asymmetrical presentation. The decision whether to initially perform unilateral or bilateral DBS is largely based on physician and/or patient preference.METHODSThis study was a retrospective cohort analysis of patients with PD undergoing initial unilateral DBS for asymmetrical disease between January 1999 and December 2017 at the authors’ institution. Patients treated with DBS for essential tremor or other conditions were excluded. Variables collected included demographics at surgery, time since diagnosis, Unified Parkinson’s Disease Rating Scale motor scores (UPDRS-III), patient-reported quality-of-life outcomes, side of operation, DBS target, intraoperative complications, and date of follow-up. Paired t-tests were used to assess mean changes in UPDRS-III. Cox proportional hazards analysis and the Kaplan-Meier method were used to determine factors associated with time to second lead insertion over 5 years.RESULTSThe final cohort included 105 patients who underwent initial unilateral DBS for asymmetrical PD; 59% of patients had a second-sided lead placed within 5 years with a median time of 34 months. Factors found to be significantly associated with early second-sided DBS included patient age 65 years or younger, globus pallidus internus (GPi) target, and greater off-medication reduction in UPDRS-III score following initial surgery. Older age was also found to be associated with a smaller preoperative UPDRS-III levodopa responsiveness score and with a smaller preoperative to postoperative medication-off UPDRS-III change.CONCLUSIONSYounger patients, those undergoing GPi-targeted unilateral DBS, and patients who responded better to the initial DBS were more likely to undergo early second-sided lead placement. Therefore, these patients, and patients who are more responsive to medication preoperatively (as a proxy for DBS responsiveness), may benefit from consideration of initial bilateral DBS.

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