Arnaud Storck , Marie Thérèse Abiwarde , Gaelle Hardy , Anne-Sophie Lebre , Sophie Scheidecker , Maria Cristina Antal , Mathieu Anheim , Thomas Wirth
{"title":"Confirmation of biallelic VPS11 variants as a cause of complex dystonic syndrome","authors":"Arnaud Storck , Marie Thérèse Abiwarde , Gaelle Hardy , Anne-Sophie Lebre , Sophie Scheidecker , Maria Cristina Antal , Mathieu Anheim , Thomas Wirth","doi":"10.1016/j.prdoa.2025.100419","DOIUrl":"10.1016/j.prdoa.2025.100419","url":null,"abstract":"","PeriodicalId":33691,"journal":{"name":"Clinical Parkinsonism Related Disorders","volume":"14 ","pages":"Article 100419"},"PeriodicalIF":1.8,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145927701","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Khashayar Dashtipour , Mehrbod Vakhshoori , Zahra Hashempour , Alberto J. Espay , Mark Ghamsary , Jacob Jones , Farzin Pedouim , Karen Frei , Ava Baghaei
{"title":"One patient, one destiny: A cluster analysis of the Parkinson’s progression Markers Initiative (PPMI) cohort","authors":"Khashayar Dashtipour , Mehrbod Vakhshoori , Zahra Hashempour , Alberto J. Espay , Mark Ghamsary , Jacob Jones , Farzin Pedouim , Karen Frei , Ava Baghaei","doi":"10.1016/j.prdoa.2026.100437","DOIUrl":"10.1016/j.prdoa.2026.100437","url":null,"abstract":"<div><h3>Background</h3><div>Parkinson’s disease (PD) is characterized by heterogeneity. While previous efforts have aimed to categorize patients by clinical subtypes, these classifications have not reliably predicted outcomes, underscoring the complexity and variability of disease progression.</div></div><div><h3>Methods</h3><div>Using data from the Parkinson’s Progression Markers Initiative (PPMI), we conducted a longitudinal analysis of 209 individuals with PD over five years. We used cluster analysis to identify trajectory clusters in the progression of motor symptoms. Participants were categorized based on baseline variables, including age, sex, race, BMI, genetic mutation status, medical history, presence of jaw and limb tremors, and alpha-synuclein seeding status. Motor and non-motor outcomes, such as gait abnormalities, dyskinesia, motor fluctuations, dystonia, cognitive impairment, hallucinations, and others, were evaluated, along with the progression of the levodopa equivalent daily dose (LEDD). Sankey plots illustrated patient trajectories from baseline to outcome groups over time.</div></div><div><h3>Results</h3><div>Trajectory cluster analysis of MDS-UPDRS Part III scores identified three progression patterns: slow, intermediate, and rapid, with higher baseline BMI associated with faster motor progression (P < 0.01). Grouping based on baseline features identified 136 distinct patient groups, with substantial dispersion across clinical outcomes. Patients with identical baseline profiles frequently diverged into separate outcome groups. Genetic/SAA stratification also showed marked variability in progression with no significant association across trajectory clusters (P > 0.05).</div></div><div><h3>Conclusion</h3><div>These findings highlight the existence of highly individualized clinical trajectories, even among patients with similar baseline characteristics, within the specific set of baseline variables examined in this study. This emphasizes the need for a personalized, patient-centered approach in both the management and study of Parkinson’s disease.</div></div>","PeriodicalId":33691,"journal":{"name":"Clinical Parkinsonism Related Disorders","volume":"14 ","pages":"Article 100437"},"PeriodicalIF":1.8,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147537829","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Hippocampal-striatal interaction in Parkinson’s disease with mild cognitive impairment","authors":"Jingjing Xu , Sijia Tan , Xiaohui Zhang , Minming Zhang , Xiaojun Xu","doi":"10.1016/j.prdoa.2026.100443","DOIUrl":"10.1016/j.prdoa.2026.100443","url":null,"abstract":"<div><h3>Background</h3><div>Striatal dopaminergic dysfunction and hippocampal degeneration contribute to cognitive impairment in Parkinson’s disease (PD). However, their interaction in PD-related cognitive decline remains unclear.</div></div><div><h3>Objective</h3><div>We aimed to investigate whether asymmetry of striatal dopaminergic integrity and hippocampal subfield volume are associated with cognitive performance in PD, and whether their statistical interaction provides additional explanatory value.</div></div><div><h3>Methods</h3><div>A cohort of 53 participants from the Parkinson’s Progression Markers Initiative (PPMI) was analyzed, including 33 PD with mild cognitive impairment (PD-MCI) patients and 20 PD with normal cognition (PD-NC) patients. All patients had complete 18F-AV-133 vesicular monoamine transporter 2 PET and 3D-T1w imaging. Asymmetry indices (AI) were calculated for striatal 18F-AV-133 standard uptake volume ratio (SUVR) and hippocampal subfield volumes.</div></div><div><h3>Results</h3><div>PD-MCI showed higher AI in caudate and anterior putamen uptake versus PD-NC. Hippocampal CA2/3 and granule cell layer AI correlated with MoCA. Caudate and anterior putamen uptake AI linked to multiple cognitive domains. Regression analysis revealed interactions between anterior putamen SUVR AI and CA2/3 AI on MoCA in PD (p = 0.039), and posterior putamen SUVR AI with CA2/3 AI on MoCA in PD-MCI (p = 0.002).</div></div><div><h3>Conclusion</h3><div>Striatal dopaminergic asymmetry and hippocampal subfield asymmetry are both associated with cognitive impairment in PD. In exploratory regression models, the association between CA2/3 asymmetry and global cognition varied according to the degree of striatal dopaminergic asymmetry. These findings clarified the relationship between hippocampus and dopaminergic pathways in PD with cognitive decline, and deepen understanding of the pathophysiological mechanisms of cognitive impairment.</div></div>","PeriodicalId":33691,"journal":{"name":"Clinical Parkinsonism Related Disorders","volume":"14 ","pages":"Article 100443"},"PeriodicalIF":1.8,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147740081","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Olga Klepitskaya , Peter A. LeWitt , Camilla Kilbane , Lauren C. Seeberger , Stuart H. Isaacson , Ramon Gil , Ryan S. Drake , Galit Kleiner , Glenn T. Stebbins , Michael Serbin , Helena C. Brigas , Daniel Ramos , Stacy Rattana , Jeff Trotter , Grace Liang
{"title":"Opicapone in Parkinson’s patients with motor fluctuations: clinical assessments and patient-reported outcomes from the OPTI-ON study","authors":"Olga Klepitskaya , Peter A. LeWitt , Camilla Kilbane , Lauren C. Seeberger , Stuart H. Isaacson , Ramon Gil , Ryan S. Drake , Galit Kleiner , Glenn T. Stebbins , Michael Serbin , Helena C. Brigas , Daniel Ramos , Stacy Rattana , Jeff Trotter , Grace Liang","doi":"10.1016/j.prdoa.2026.100435","DOIUrl":"10.1016/j.prdoa.2026.100435","url":null,"abstract":"<div><h3>Introduction</h3><div>This study evaluated treatment outcomes of opicapone when used as add-on to levodopa in US patients with Parkinson’s disease (PD) experiencing OFF episodes in clinical settings.</div></div><div><h3>Methods</h3><div>The prospective, open-label, multicenter, observational OPTI-ON study examined patient characteristics, treatment outcomes, and safety/tolerability of Opicapone over 6 months. Clinician-reported outcomes included the Clinician Global Impression of Change (CGI-C), and Movement Disorder Society-sponsored revision of the Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) Parts IA and IV. Patient-reported outcomes included the Patient Global Impression of Change (PGI-C), MDS-UPDRS Parts IB and II, and the novel Patient Global Impression of Severity in ON and OFF states (PGI-S ON and OFF) and Non-motor Fluctuation Assessment (NoMoFa).</div></div><div><h3>Results</h3><div>The completer set included 161 patients (mean age, 66.8 years; PD duration, 7.8 years; fluctuation onset, 3.6 years). 38.0% of patients were ‘very much/much improved’ on CGI-C; 48.7% and 57.5% showed improvement on MDS-UPDRS Parts IA and IV, respectively; 23.5% of patients rated themselves ‘very much/much improved’ on PGI-C, and 49.5% and 56.5% reported improvements on MDS-UPDRS Parts IB and II, respectively. On PGI-S ON, the proportions of patients with ‘none/very mild’ PD symptoms during ON times were maintained, while, on PGI-S OFF, the proportion of patients with ‘moderately to extremely severe’ PD symptoms during OFF times decreased by 12.7%. NoMoFa Total Score improved in 48.0% of patients. Opicapone was generally well tolerated.</div></div><div><h3>Conclusions</h3><div>In clinical practice, OPC treatment led to improvements in motor and non-motor fluctuations, quality of OFF episodes, and was generally well tolerated.</div></div>","PeriodicalId":33691,"journal":{"name":"Clinical Parkinsonism Related Disorders","volume":"14 ","pages":"Article 100435"},"PeriodicalIF":1.8,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147702941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Patterns of weariness-related symptoms in Parkinson’s disease: impact of disease progression and levodopa treatment","authors":"Danielle Hersonsky , Assaf Benesh , Edmund Ben-Ami , Eitan Raveh","doi":"10.1016/j.prdoa.2026.100442","DOIUrl":"10.1016/j.prdoa.2026.100442","url":null,"abstract":"<div><h3>Background</h3><div>Weariness-related symptoms (WRS), i.e. fatigue, daytime sleepiness, and sleep problems are common non-motor symptoms in Parkinson’s disease (PD) that impair quality of life. Although related, they represent distinct clinical domains, and the role of dopaminergic therapy in their progression remains unclear. We compared stable levodopa regimens with levodopa dose escalation to evaluate their impact on WRS evolution.</div></div><div><h3>Methods</h3><div>From a database of 1,521 PD patients, 159 individuals (mean age 64.7 ± 9.36 years; 61.7% male; Hoehn and Yahr stage 0–2) with two assessments 6–18 months apart were included. Patients were grouped into stable medication regimen (SMR) or increased levodopa dose (ILD). Longitudinal changes in fatigue, daytime sleepiness, and nighttime sleep problems were analyzed, including age-stratified comparisons.</div></div><div><h3>Results</h3><div>In the SMR group, daytime sleepiness increased significantly over time (0.21 ± 0.86, P = 0.001), while fatigue and sleep problems remained stable. In contrast, the ILD group showed a significant increase in fatigue (0.15 ± 0.89, P = 0.017), with no changes in daytime sleepiness or sleep problems. Worsening daytime sleepiness under stable medication was confined to older patients (>65 years, P = 0.003), whereas fatigue worsening after levodopa escalation was mainly observed in younger patients (≤65 years, P = 0.03).</div></div><div><h3>Conclusion</h3><div>Daytime sleepiness appears disease-driven and independent of medication changes, while fatigue is more closely associated with levodopa escalation, supporting individualized management and targeted therapeutic development.</div></div>","PeriodicalId":33691,"journal":{"name":"Clinical Parkinsonism Related Disorders","volume":"14 ","pages":"Article 100442"},"PeriodicalIF":1.8,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147702942","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Alexander Calvano , Dilara Bingoel , Laura Beccaria , Fabian Bodlee , Lars Timmermann , Natalia Kurka , David J. Pedrosa
{"title":"Parkinsonism-dystonia syndrome due to a PARK7 gene mutation","authors":"Alexander Calvano , Dilara Bingoel , Laura Beccaria , Fabian Bodlee , Lars Timmermann , Natalia Kurka , David J. Pedrosa","doi":"10.1016/j.prdoa.2025.100412","DOIUrl":"10.1016/j.prdoa.2025.100412","url":null,"abstract":"<div><div>We describe a young woman with a novel homozygous PARK7 mutation causing an early-onset and progressive parkinsonism-dystonia syndrome with poor dopaminergic response. Clinical heterogeneity among homozygous mutation carriers emphasises that molecular characterisation of novel variants and detailed phenotyping remain indispensable for enhancing early diagnosis and the understanding of the multifaceted role of DJ1 in the context of neurodegeneration.</div></div>","PeriodicalId":33691,"journal":{"name":"Clinical Parkinsonism Related Disorders","volume":"14 ","pages":"Article 100412"},"PeriodicalIF":1.8,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145927702","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Wenming Lu , Longxiang Yan , Chuangguo Li, Kai Wang, Qijing Wang, Sisi Xu, Benguo Wang
{"title":"Efficacy and safety of repetitive transcranial magnetic stimulation on motor function, depression, and cognitive dysfunction in Parkinson’s disease: A systematic review and meta-analysis of randomized controlled trials","authors":"Wenming Lu , Longxiang Yan , Chuangguo Li, Kai Wang, Qijing Wang, Sisi Xu, Benguo Wang","doi":"10.1016/j.prdoa.2026.100422","DOIUrl":"10.1016/j.prdoa.2026.100422","url":null,"abstract":"<div><h3>Background</h3><div>Parkinson’s disease (PD) is a multifactorial neurodegenerative disease with a high prevalence worldwide, leading to motor and non-motor symptoms. Moreover, PD presents a progressive aggravation alongside time, the middle and late patients in PD requires the use of a variety of anti-Parkinson’s drugs with obvious side effects, which bring serious impact on the quality of life of patients. In recent years, repetitive transcranial magnetic stimulation (rTMS), as a kind of non-invasive neuromodulation therapy, has drawn increasing interest from neurologists, and has been effectively utilized to alleviate both motor and non-motor symptoms of PD. However, the treatment protocols and therapeutic effects of rTMS for PD patients are inconsistent. This meta-analysis aims to systematically evaluate the safety and efficacy of rTMS therapy in patients with PD.</div></div><div><h3>Methods</h3><div>We will perform a comprehensive search in the following electronic databases: PubMed/Medline, Web of Science, EMBASE, and Cochrane, without language restrictions, from their inception to September 2024. This review protocol was formulated according to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) guidelines. The Cochrane risk of bias tool is utilized to assess the risk of bias. Finally, the effect size was expressed by a standardized mean difference (SMD) with a 95% confidence interval (CI).</div></div><div><h3>Results</h3><div>A total of 45 randomized controlled trials were included. The results of enrolled studies indicated that both primary and secondary indicators had improved. Subgroup analysis showed that high-frequency rTMS (HF-rTMS) targeting the supplementary motor area (SMD = − 0.56; 95 %CI = [−0.77, −0.36]; <em>p</em> < 0.00001), primary motor cortex (SMD: −1.65; 95 %CI = [−2.35, −0.95]; <em>p</em> < 0.00001), and dorsolateral prefrontal cortex (DLPFC) (SMD: −0.68; 95 %CI = [−1.16, −0.21]; <em>p</em> = 0.005) yielded a significant reduction in motor UPDRS-III scores, compared to the sham group. In addition, HF‐rTMS over left DLPFC or intermittent theta burst stimulation over left DLPFC may benefit cognition. Furtherly, the subgroup analysis of the Beck Depression Inventory scores indicated HF-rTMS over the left DLPFC was a beneficial treatment for depressive symptoms in PD.</div></div><div><h3>Conclusion</h3><div>The meta-analysis showed that rTMS was effective and safe in the treatment of PD, improving motor function (such as a decrease in UPDRS-III total scores, subscores of UPDRS-III, and FOG-Q scores) in patients with PD and leading to improvement in cognitive function and depression (such as an increase in MocA scores and a decrease BDI scores). Although the results of the subgroup analysis provide a valuable reference for the selection of rTMS for clinical application, further larger multicenter, randomized, placebo-controlled studies with a large number of participants ","PeriodicalId":33691,"journal":{"name":"Clinical Parkinsonism Related Disorders","volume":"14 ","pages":"Article 100422"},"PeriodicalIF":1.8,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146022950","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sindhu V. Nambiar , Thomas Mathew , Vishal Chandra Sharma , Arjun Jayaprakash , Shagun Bhardwaj , Anita Mahadevanan
{"title":"An unusual case of Pisa syndrome secondary to anti-IgLon 5 disease","authors":"Sindhu V. Nambiar , Thomas Mathew , Vishal Chandra Sharma , Arjun Jayaprakash , Shagun Bhardwaj , Anita Mahadevanan","doi":"10.1016/j.prdoa.2026.100428","DOIUrl":"10.1016/j.prdoa.2026.100428","url":null,"abstract":"<div><div>Pisa syndrome, characterized by lateral flexion of the trunk, is most often associated with neuroleptic use or neurodegenerative disorders like Parkinson’s disease. Anti-IgLON5 disease is a rare neuroimmunological condition with overlapping features of autoimmunity and tauopathy, manifesting with sleep and cognitive disturbances, bulbar symptoms, and movement disorders. We report a 50-year-old man who presented with progressive lateral trunk flexion, head drop, dysarthria, and choreiform movements. The classic features of antiIgLon 5 disease including sleep and cognitive disturbances were absent. Serum testing confirmed strong positivity for anti-IgLON5 antibodies. Treatment with rituximab led to marked clinical improvement, with amelioration of symptoms at 24 months. This case illustrates an uncommon presentation of anti-IgLON5 disease as Pisa syndrome. Recognition of this association is important, as early immunotherapy can significantly improve outcomes in an otherwise progressive and disabling condition.</div></div>","PeriodicalId":33691,"journal":{"name":"Clinical Parkinsonism Related Disorders","volume":"14 ","pages":"Article 100428"},"PeriodicalIF":1.8,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147396187","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lejla Paracka , Lan Ye , Jann Lübke , Assel Saryyeva , Martin Klietz , Florian Wegner , Joachim K. Krauss
{"title":"Polysomnographic characteristics in patients with idiopathic dystonia","authors":"Lejla Paracka , Lan Ye , Jann Lübke , Assel Saryyeva , Martin Klietz , Florian Wegner , Joachim K. Krauss","doi":"10.1016/j.prdoa.2026.100427","DOIUrl":"10.1016/j.prdoa.2026.100427","url":null,"abstract":"<div><h3>Background</h3><div>Several aspects of the occurrence of sleep disturbances in dystonia remain unclear. Here, we assessed sleep architecture with polysomnography (PSG) and investigated the association of specific findings with mood, quality of life and severity of disease.</div></div><div><h3>Methods</h3><div>Twelve patients with idiopathic dystonia underwent overnight PSG and findings were compared to those of a normative collective. Subjective sleep quality was evaluated with the Pittsburgh-Sleep-Quality-Index (PSQI) and the Epworth-Sleepiness-Scale (ESS). PSG findings, PSQI and ESS were correlated to motor scores of the Burke-Fahn-Marsden-Dystonia-Rating-Scale and the Torticollis-Western-Spasmodic-Rating-Scale. Further correlations were investigated between sleep assessment and mood (Beck-Depression-Inventory (BDI) and Hamilton-Depression-Rating-Scale (HDRS)), and quality of life (SF-36 subscales).</div></div><div><h3>Results</h3><div>Patients with dystonia had impairments in REM sleep, increased N2 and arousal index. Impaired REM sleep was positively correlated with the SF-36 subscore mental health, the N1 sleep stage was associated with the HDRS score, the arousal index was negatively correlated with the SF-36 subscores social functioning and bodily pain, but positively correlated with the BDI, and daytime sleepiness according to ESS was correlated with the SF-36 subscale vitality. There were no significant correlations with motor scores.</div></div><div><h3>Conclusion</h3><div>Our study demonstrates that sleep impairment is a fundamental characteristic in patients with idiopathic dystonia affecting both mood and quality of life. Sleep disturbances are not merely a secondary consequence of the motor disorder, but appear to be an integral and primary feature of dystonia itself.</div></div>","PeriodicalId":33691,"journal":{"name":"Clinical Parkinsonism Related Disorders","volume":"14 ","pages":"Article 100427"},"PeriodicalIF":1.8,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146228831","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Maria Schmidt, Kyurim Kang, Hannah Jackson, Claudia Waddell, Anna Hall, Alexander Pantelyat
{"title":"Improving access to care through transportation and internet use for patients with atypical parkinsonism: A pilot study","authors":"Maria Schmidt, Kyurim Kang, Hannah Jackson, Claudia Waddell, Anna Hall, Alexander Pantelyat","doi":"10.1016/j.prdoa.2026.100431","DOIUrl":"10.1016/j.prdoa.2026.100431","url":null,"abstract":"<div><h3>Introduction</h3><div>This quality improvement study aimed to assess whether arrangement of transportation and/or distribution of internet-enabled tablets could improve access to care in a multi-disciplinary Atypical Parkinsonism clinic for patients with Progressive Supranuclear Palsy (PSP), corticobasal syndrome (CBS), and multiple system atrophy (MSA) who 1) lack the ability to arrange transportation to our clinics; 2) lack reliable Internet access/devices for telehealth, or 3) both 1) and 2).</div></div><div><h3>Methods</h3><div>Patients and care partners completed digitally distributed surveys and were given the option to complete hard copy surveys. The primary outcome variable was change in patient-reported Accessibility survey responses at 6 months, and secondary outcome variables included change in patient-reported assessments (PSP-QoL, CBFS, MSA-QoL) and Zarit Caregiver Burden Scale scores at 6 months.</div></div><div><h3>Results</h3><div>While limited access to resources was a less frequently reported factor at 6-month follow-up, there was an increase in factors contributing to worse quality of life (QoL) for PSP patients. There was no effect on transportation barriers at 6-month follow-up.</div></div><div><h3>Conclusions</h3><div>Integrating transportation support into routine care processes can help improve access to care for patients with PSP, CBS, and MSA.</div></div>","PeriodicalId":33691,"journal":{"name":"Clinical Parkinsonism Related Disorders","volume":"14 ","pages":"Article 100431"},"PeriodicalIF":1.8,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147327440","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}