Search

Background: Enhancing the interactions between study participants, clinicians, and investigators is imperative for advancing Parkinson's disease (PD) research. The Canadian Open Parkinson Network (C-OPN) stands as a nationwide endeavor, connecting the PD community with ten accredited universities and movement disorders research centers spanning, at the time of this analysis, British Columbia, Alberta, Ontario, and Quebec. Objective: Our aim is to showcase C-OPN as a paradigm for bolstering national collaboration to accelerate PD research and to provide an initial overview of already collected data sets. Methods: The C-OPN database comprises de-identified data concerning demographics, symptoms and signs, treatment approaches, and standardized assessments. Additionally, it collects venous blood-derived biomaterials, such as for analyses of DNA, peripheral blood mononuclear cells (PBMC), and serum. Accessible to researchers, C-OPN resources are available through web-based data management systems for multi-center studies, including REDCap. Results: As of November 2023, the C-OPN had enrolled 1,505 PD participants. The male-to-female ratio was 1.77:1, with 83% (n = 1098) residing in urban areas and 82% (n = 1084) having pursued post-secondary education. The average age at diagnosis was 60.2±10.3 years. Herein, our analysis of the C-OPN PD cohort encompasses environmental factors, motor and non-motor symptoms, disease management, and regional differences among provinces. As of April 2024, 32 research projects have utilized C-OPN resources. Conclusions: C-OPN represents a national platform promoting multidisciplinary and multisite research that focuses on PD to promote innovation, exploration of care models, and collaboration among Canadian scientists. Plain Language Summary: Teamwork and communication between people living with Parkinson's disease (PD), physicians, health professionals, and research scientists is important for improving the lives of those living with this condition. The Canadian Open Parkinson Network (C-OPN) is a Canada-wide initiative, connecting the PD community with ten accredited universities and movement disorders research centers located in – at the time of this analysis–British Columbia, Alberta, Ontario, and Quebec. The aim of this paper is to showcase C-OPN as a useful resource for physician and research scientists studying PD in Canada and around the world, and to provide snapshot of already collected data. The C-OPN database comprises de-identified (meaning removal of any identifying information, such as name or date of birth) data concerning lifestyle, disease symptoms, treatments, and results from standardized tests. It also collects blood samples for further analysis. As of November 2023, C-OPN had enrolled 1,505 PD participants across Canada. Most of the participants were male (64%), living in urban areas (83%), and completed post-secondary education (82%). The average age at diagnosis was 60.2±10.3 years. In this paper, we look at environmental factors, motor and non-motor symptoms, different disease management strategies, and regional differences between provinces. In conclusion, C-OPN represents a national platform that encourages multidisciplinary and multisite research focusing on PD to promote innovation and collaboration among Canadian scientists. [ABSTRACT FROM AUTHOR]

Background Objective Methods Results Conclusion Little is known about factors modulating pain and pain‐related functional impairment in isolated cervical dystonia (CD).The aim was to assess the prevalence and interrelationship between pain‐modulating factors and pain‐related determinants of functional impairment and quality of life in CD.We analyzed pain‐aggravating and pain‐relieving external factors, the degree of pain‐related functional impact on routine activities, and the relationship between these and pain severity, using cross‐sectional data collected using the Pain in Dystonia Scale (PIDS) from 85 participants with CD. Pairwise correlation analyses and age‐ and sex‐adjusted linear regression models estimated the relationship between pain‐modulating factors and pain severity, and the impact of pain severity, dystonia severity, and psychiatric symptoms on pain‐related functional impairment and disease‐specific quality of life (measured using the Craniocervical Dystonia Questionnaire‐24).Stress and prolonged fixed position were the most frequent and impacting pain triggers, with women reporting larger impact. The average impact of pain‐relieving factors was lower than that of pain triggers. Physical exercise and social gatherings were the most impacted activities by pain in CD. The intensity of external modulating factors was a predictor of pain severity. Severity of pain, CD, and psychiatric symptoms independently predicted pain‐related functional impairment, whereas quality of life was predicted by pain severity, pain‐related functional impairment, and psychiatric symptom severity, but not dystonia severity.The PIDS provides insight into external modulation and functional impact of pain in CD. The pattern of external modulation of pain in CD is in line with a multifactorial modulation and complex physiology. [ABSTRACT FROM AUTHOR]

Background: Parkinson's disease (PD) has been consistently linked to alterations within the gut microbiome. Objective: Our goal was to identify microbial features associated with PD incidence and progression. Methods: Metagenomic sequencing was used to characterize taxonomic and functional changes to the PD microbiome and to explore their relation to bacterial metabolites and disease progression. Motor and non‐motor symptoms were tracked using Movement Disorder Society Unified Parkinson's Disease Rating Scale (MDS‐UPDRS) and levodopa equivalent dose across ≤5 yearly study visits. Stool samples were collected at baseline for metagenomic sequencing (176 PD, 100 controls). Results: PD‐derived stool samples had reduced intermicrobial connectivity and seven differentially abundant species compared to controls. A suite of bacterial functions differed between PD and controls, including depletion of carbohydrate degradation pathways and enrichment of ribosomal genes. Faecalibacterium prausnitzii‐specific reads contributed significantly to more than half of all differentially abundant functional terms. A subset of disease‐associated functional terms correlated with faster progression of MDS‐UPDRS part IV and separated those with slow and fast progression with moderate accuracy within a random forest model (area under curve = 0.70). Most PD‐associated microbial trends were stronger in those with symmetric motor symptoms. Conclusion: We provide further evidence that the PD microbiome is characterized by reduced intermicrobial communication and a shift to proteolytic metabolism in lieu of short‐chain fatty acid production, and suggest that these microbial alterations may be relevant to disease progression. We also describe how our results support the existence of gut‐first versus brain‐first PD subtypes. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. [ABSTRACT FROM AUTHOR]

Background and purpose: The aim was to test the specificity of phenomenological criteria for functional tic‐like behaviours (FTLBs). The European Society for the Study of Tourette Syndrome (ESSTS) criteria for the diagnosis of FTLBs include three major criteria: age at symptom onset ≥12 years, rapid evolution of symptoms and specific phenomenology. Methods: Children and adolescents with primary tic disorders have been included in a Registry in Calgary, Canada, since 2017. Using the Yale Global Tic Severity Scale, the proportion of youth with primary tic disorders who met specific phenomenological criteria for FTLBs at first visit was assessed: (1) having ≥1 specific complex motor tic commonly seen in FTLBs, including complex arm/hand movements, self‐injurious behaviour, blocking, copropraxia; (2) having ≥1 specific complex phonic tic commonly seen in FTLBs, including saying words, phrases, disinhibited speech, coprolalia; (3) having a greater number of complex tics than simple tics. Children seen for the first time between 2017 and 2019 and between 2021 and 2023 were analysed separately. Results: Of 156 participants included between 2017 and 2019, high specificity (94.2%) of the age at onset criterion (≥12 years) and of having at least two complex motor behaviours and one complex phonic behaviour at first visit (96.2%) was observed. Some of the complex motor tics had lower specificity. The specificity of the FTLB diagnostic criterion of having more complex tics than simple tics was 89.7%. There was no significant difference in specificity of the criteria for children seen for the first time between 2017 and 2019 and between 2021 and 2023 (n = 149). Conclusion: This information supports the use of the ESSTS criteria for FTLBs in clinical practice. [ABSTRACT FROM AUTHOR]

Despite the growing interest on how Tourette syndrome (TS) affects social cognition skills, this field remains to date relatively under‐explored. Here, we aim to advance knowledge on the topic by studying moral decision‐making and moral reasoning in a group of adolescents with TS and a group of healthy controls. Overall, we found higher endorsement (i.e. a greater 'yes' response rate) for utilitarian solutions of incidental and instrumental moral dilemmas in TS compared to controls. By contrast, we reported an overall higher tendency of TS individuals to apply principles described in the moral foundation questionnaire to establish whether something is morally right or wrong. Our results document intact moral reasoning in TS and suggest that a deficit in suppressing inappropriate behaviours and/or altered sense of agency might be responsible for their higher utilitarian moral decision‐making. [ABSTRACT FROM AUTHOR]