De Sandi A, Aiello EN, Verardo F
… +12 more, Mellace D, Marfoli A, Manzoni C, Zago S, Pisano F, Santangelo G, Mailland E, Zirone E, Mameli F, Poletti B, Cogiamanian F, Ferrucci R
BackgroundAccessible screening tools are crucial for the early detection of cognitive impairment in Parkinson's disease (PD), especially in contexts where in-person assessments are not feasible.ObjectiveTo assess the cli...BackgroundAccessible screening tools are crucial for the early detection of cognitive impairment in Parkinson's disease (PD), especially in contexts where in-person assessments are not feasible.ObjectiveTo assess the clinical usability of telephone-based cognitive screening (TBCS) tools in PD patients.MethodsForty-two non-demented PD individuals and = 103 healthy controls (HCs) underwent a TBCS battery including the Telephone Interview for Cognitive Status (TICS), the Telephone-based Frontal Assessment Battery (t-FAB) and sub-tests from the Telephone-based Verbal Fluency Battery (t-VFB) and Telephone Language Screener (TLS). PD individuals were also administered the Montreal Cognitive Assessment (MoCA) in person and assessed for behavior and cognitive-driven functional independence caregiver-report questionnaires administered over the telephone (Neuropsychiatric Inventory, NPI and Amsterdam IADL Questionnaire - 30-item version, A-IADL-Q-30, respectively). Correlations were run to test the construct and ecological validity of TBCS tests in PD individuals; ROC analyses were run to test the capability of TBCS tests to discriminate PD individuals from HCs and PD individuals with a defective MoCA from those performing normally (PD-MCI vs. PD-CN).ResultsThe vast majority of TBCS measures were significantly associated with the MoCA and A-IADL-Q-30 scores, supporting convergent and ecological validity, respectively; TBCS measures also diverged from the NPI. TBCS measures of global cognition and executive-attentive measures discriminated PD individuals from HCs with acceptable accuracy (AUC = 0.71-0.75), showing, by contrast, a better performance in differentiating PD-MCI from PD-CN groups (AUC = 0.74-0.89).ConclusionTBCS tests are clinimetrically sound tools for identifying cognitive deficits in PD.
BackgroundMisalignment between actual and perceived balance ability provides relevant information to understand functional deficits and fall risk. However, few studies have provided a continuous quantification of misalig...BackgroundMisalignment between actual and perceived balance ability provides relevant information to understand functional deficits and fall risk. However, few studies have provided a continuous quantification of misalignment in neurological populations such as people with Parkinson's disease (PD).ObjectiveDetermine whether a continuous quantification of misalignment between actual and perceived balance ability, discordance, relates to functional outcomes such as quality of life and cognition.MethodsActual (gait velocity), and perceived (Activities of Balance Confidence) balance, cognition (measured via a computer-based cognitive assessment), and mobility-related quality of life were captured in a clinical sample of 95 people with PD. Primary outcomes were quality of life and cognitive domains frequently altered in people with PD (global cognition & executive function). Secondary cognitive domains assessed were attention, memory, visuo-spatial, verbal function, and information processing. Linear and non-linear models assessed the relationship between discordance, quality of life, and cognition.ResultsDiscordance related to mobility-related quality of life, such that under-confidence was related to poorer quality of life. Non-linear (quadratic) models were shown to fit the discordance-Global cognition ( = 0.02) data better than linear models such that over- and under-confidence related to poorer cognition. Secondary cognitive domains were not robustly related to discordance.ConclusionsIn a clinical sample of people with PD, discordance was related to mobility-related quality of life and global cognition. Global cognition further exhibited a possible non-linear relationship to discordance indicating that over- or under-confidence may relate to poorer cognition. This work underscores the functional relevance of misalignment of actual and balance abilities.
The alpha-synuclein seed amplification assay in cerebrospinal fluid is the first validated molecular measurement of alpha-synuclein biology in a living person. The SAA test is transforming our understanding of aging and...The alpha-synuclein seed amplification assay in cerebrospinal fluid is the first validated molecular measurement of alpha-synuclein biology in a living person. The SAA test is transforming our understanding of aging and neurodegenerative diseases by detecting abnormal synuclein biology, and data suggests SAA positivity can occur across Parkinson's disease, Alzheimer's disease, and Dementia with Lewy Bodies. To accelerate development of this important research tool, the Michael J. Fox Foundation proactively funded a community of researchers to work both independently and collaboratively, leading to rapid and iterative progress and validation. The collective validation of the assay across industry and academic groups culminated in a Food and Drug Administration Letter of Support for the test in clinical trials for PD. This article describes the principles that accelerated the development of the assay including patient engagement, collaboration, a commitment to open science through data, sample, and knowledge sharing, and showcases how an international community of experts rallied together towards a common goal.
BackgroundIn anticipation of future clinical trials involving individuals with Parkinson's disease (PD), it is important to have fully validated, clinically-relevant, responsive, disease-specific patient-reported outcome...BackgroundIn anticipation of future clinical trials involving individuals with Parkinson's disease (PD), it is important to have fully validated, clinically-relevant, responsive, disease-specific patient-reported outcome measures that are capable of serially measuring how an individual with PD feels and functions.ObjectiveTo develop and validate a disease-specific patient-reported outcome measure for PD that is sensitive in detecting clinically meaningful changes in multifactorial disease burden during clinical trials.MethodsWe conducted qualitative interviews and a cross-sectional study to identify the most important symptoms to individuals with PD. Symptom questions with the highest frequency and relative importance to the cross-sectional study cohort were selected for potential inclusion in the Parkinson's Disease-Health Index (PD-HI). The PD-HI was evaluated and refined through: 1) Qualitative beta interviews; 2) Test-retest reliability assessments; 3) Internal consistency analysis; and 4) Cross-sectional subgroup analysis of PD-HI subscale scores.ResultsTwenty individuals with PD participated in initial qualitative interviews and 404 individuals with PD participated in the cross-sectional study. Symptom questions representing 13 symptomatic themes of PD health were selected for inclusion in the PD-HI. Beta interview participants found the PD-HI to be comprehensive, relevant, and easy to use. The PD-HI demonstrated high test-retest reliability (ICC = 0.90) and internal consistency (α= 0.99). PD-HI total and subscale scores successfully distinguished between subgroups of participants with varying disease severity.ConclusionsInitial evaluation of the PD-HI demonstrates its content validity, construct validity, usability, and test-retest reliability as a patient-reported outcome tool for potential use in PD clinical trials.
The central cholinergic system plays a crucial role in neural communication and physiological regulation, mediated by acetylcholine (ACh) and cholinergic receptors in the central nervous system (CNS). In this review, we...The central cholinergic system plays a crucial role in neural communication and physiological regulation, mediated by acetylcholine (ACh) and cholinergic receptors in the central nervous system (CNS). In this review, we explore the extensive distribution and impact of the central cholinergic system and its pivotal involvement in Parkinson's disease (PD). Despite PD being traditionally perceived as primarily a dopaminergic disorder, it exhibits significant cholinergic alterations, contributing to both motor and non-motor symptoms. These PD-specific alterations manifest as neuroanatomical changes, diminished acetylcholinesterase activity, and functional disturbances across various brain regions, impacting cognition, mood, sensory perception, sleep, and motor function. Comprehension of these cholinergic dysfunctions is paramount for the development of targeted therapies aimed at alleviating these PD symptoms. To provide further insight, we explore the therapeutic potential of nicotinic acetylcholine receptors (nAChRs) in PD, highlighting their role in preventing apoptosis, modulating neuroinflammation, and mitigating CNS damage. In summary, this review underscores the critical importance of cholinergic mechanisms in PD pathology and champions cholinergic-based interventions for enhanced patient outcomes and improved quality of life.
Parkinson's disease (PD) is characterized by progressive motor and non-motor dysfunction arising from synaptic pathology that precedes neuronal loss. Synaptic dysfunction represents a central pathological mechanism in bo...Parkinson's disease (PD) is characterized by progressive motor and non-motor dysfunction arising from synaptic pathology that precedes neuronal loss. Synaptic dysfunction represents a central pathological mechanism in both familial and sporadic PD, with multiple PD-linked genes directly regulating synaptic vesicle (SV) trafficking. Here, we review recent studies linking SV dysfunction to PD pathology by examining how disease-linked proteins dysregulate distinct steps in the SV cycle and by exploring their cascading effects on synaptic physiology and circuit function. We highlight three critical pathogenic mechanisms: (1) impaired neurotransmitter import and storage, (2) disrupted SV pool organization, and (3) altered SV exocytosis and endocytosis. We also review recent studies investigating how presynaptic pathology triggers impairments in postsynaptic plasticity and circuit-level reorganization across brain regions. Together, these studies highlight that presynaptic SV dysfunction is a central mechanism in PD pathogenesis and therefore a promising target for developing therapeutic strategies aimed at reverting these early disease-driving synaptic changes.
BackgroundOsteoporosis and major osteoporotic fracture are more common in PD than controls, but evaluation of sociodemographic factors and preventive treatment is limited.MethodsIn a UK population-based nested case-contr...BackgroundOsteoporosis and major osteoporotic fracture are more common in PD than controls, but evaluation of sociodemographic factors and preventive treatment is limited.MethodsIn a UK population-based nested case-control study, incidence rates of osteoporosis and major osteoporotic fracture were calculated, and risk factors and bone health treatments analyzed by multivariable regression.ResultsFalls, osteoporosis and major osteoporotic fracture were more likely before a diagnosis of PD compared to controls ( < 0.0001). After diagnosis, incident osteoporosis, HR 1.96 (1.90, 2.02) and incident fractures, HR 2.16 (2.11, 2.21) were more likely in PD than controls, both < 0.005. Risks of fracture were increased in PD cases during 3 consecutive time periods post-diagnosis: 0-7 years, HR 2.15 (2.09, 2.21), 7-14 years, HR 2.36 (2.24, 2.48), and 14-21 years, HR 1.88 (1.62, 2.17), all < 0.0001. Risks of osteoporosis and fracture increased with older age, female sex, greater deprivation and White ethnicity. In PD, anti-osteoporosis treatment was underutilized in men, OR 0.25 (0.24, 0.26) versus women, being lower than the relative risks of osteoporosis in men, HR 0.35 (0.32, 0.37) and fracture in men, HR 0.60 (0.57, 0.63). There was also underutilization of anti-osteoporosis treatment in the most deprived quintile, HR 0.85 (0.80, 0.90), despite significantly higher rates of osteoporosis, HR 1.14 (1.01, 1.28) and fracture, HR 1.17 (1.06, 1.30).ConclusionThe increased bone health risks at all stages including the prodrome, and across multiple risk categories, emphasizes the need for early bone health assessment and increased anti-osteoporosis treatment rates.
IntroductionDespite being the fastest-growing ethnic group in the United States, Asian Americans, encompassing all ethnic subgroups, remain notably underrepresented in Parkinson's Disease (PD) research and clinical trial...IntroductionDespite being the fastest-growing ethnic group in the United States, Asian Americans, encompassing all ethnic subgroups, remain notably underrepresented in Parkinson's Disease (PD) research and clinical trials. This qualitative study seeks to address this gap by exploring how Asian Americans experience PD diagnosis, treatment, care, and research participation.MethodsIn-depth interviews were conducted with ten Chinese and Vietnamese people with Parkinson's disease (PWP), nine family care partners, ten providers, and a focus group discussion was conducted with three community advocates in the Greater Boston area. Data were coded using a behavioral model that organizes health services utilization into three domains - predisposing, enabling, and need factors. Resulting themes were then mapped onto an access-to-care framework that conceptualizes access as influenced by both health system characteristics and individuals' abilities to seek, reach, afford, and engage in care.ResultsWe identified individual- and systems-level barriers that present before and after the initial establishment of care, and additional barriers that inhibit research participation among Chinese and Vietnamese PWP. Barriers to delayed diagnosis and reduced quality of care included linguistic and physical inaccessibility to healthcare services, limited health literacy about PD symptoms, cultural beliefs, dissatisfaction with care, shame, and stigma. Outreach from researchers who share a similar ethnicity as PWP may help enhance research participation.ConclusionsOur findings help fill important research gaps regarding the diagnosis and treatment of Asian American PWP. Recommendations for improvements include the need for linguistically- and culturally-tailored health education, outreach, and services to better support Asian American PWP.
BackgroundThis study aimed to use data from the PD-MDCNC database to develop a risk prediction model using machine learning (ML) methods for the early identification of the risk of mild cognitive impairment in Parkinson'...BackgroundThis study aimed to use data from the PD-MDCNC database to develop a risk prediction model using machine learning (ML) methods for the early identification of the risk of mild cognitive impairment in Parkinson's disease (PD-MCI) within a Parkinson's disease (PD) patients cohort.MethodsThis study used assessment scales and blood test results from 523 patients with Parkinson's disease (PD) in the PD-MDCNC database, collected from the Hubei Parkinson's Disease Clinical Research Center, to develop a predictive model for assessing the risk of mild cognitive impairment (MCI) in PD patients. Using simple assessment scales and blood test data, we developed ten machine learning algorithms to predict PD-MCI. The optimal model was determined through comparison, and its performance was evaluated using an external validation cohort of 139 PD patients from a Taihe state hospital in Shiyan City, Hubei Province.ResultsThe area under the receiver operating characteristic curve (AUC) for the ten models ranged from 0.57 to 0.72. The best predictive performance was achieved with RF (AUC=0.72). The variable importance ranking results indicated that the U3 score was the best important feature in predicting PD-MCI.ConclusionsThis study presents a robust machine learning model for the early detection of MCI in PD patients, which may help provide a simple method for early identification of PD-MCI patient.
Effective sharing of large datasets across traditionally siloed research domains has the power to transform conventional research practice dramatically, but has been stymied by persistent barriers to data access and inte...Effective sharing of large datasets across traditionally siloed research domains has the power to transform conventional research practice dramatically, but has been stymied by persistent barriers to data access and interoperability. The 2025 Private Funders' Parkinson's Disease and Related Disorders (PDRD) Data Interoperability Summit brought together technical leaders from North American-based private funders and research organizations engaged in large-scale neurodegenerative data efforts to address these challenges through the lens of FAIR (Findability, Accessibility, Interoperability, and Reusability) principles. Pre-summit activities included structured interviews, comprehensive data assessments, and preparatory exercises to identify common pain points, systemic gaps, and areas of opportunity across the data ecosystem. During the summit, participants collaboratively developed and prioritized a suite of actionable recommendations, underscoring the urgency and complexity of improving the neurodegenerative data ecosystem. Despite facing significant technical, legal, regulatory, and cultural barriers - ranging from high data management costs and privacy concerns to fragmented governance structures - participants expressed strong alignment on the need for strategic, equitable, and collaborative solutions. Here, we summarize the emerging recommendations from those discussions as well as the high-priority initiatives selected for immediate action across the funding agencies. These efforts mark a critical first step in addressing longstanding barriers and reflect a shared commitment to advancing collaborative data sharing. Continued work in this area promises to accelerate discovery and innovation, with the potential to drive significant breakthroughs in the understanding, diagnosis, and treatment of neurodegenerative diseases.
BackgroundLevodopa is still the cornerstone of symptomatic treatment for people with Parkinson's disease (PwP). With disease progression and long-term use, PwP can develop motor complications such as wearing off and dysk...BackgroundLevodopa is still the cornerstone of symptomatic treatment for people with Parkinson's disease (PwP). With disease progression and long-term use, PwP can develop motor complications such as wearing off and dyskinesia. There is limited practical guidance on the early identification of motor fluctuations and the optimal timing of adjunctive therapies in clinical practice.ObjectiveTo develop expert consensus on best practices for initiating and monitoring levodopa therapy, recognising early motor fluctuations, incorporating adjunctive therapies, and improving patient education in the management of Parkinson's disease (PD).MethodsA modified Delphi methodology was used. A steering committee (SC) of nine clinicians with experience in managing PD drafted 59 consensus statements across four thematic domains. Statements were developed into an online survey and distributed to a panel of UK-based healthcare professionals (HCPs). Respondents rated their agreement using a four-point Likert scale. Consensus was defined as ≥75% agreement.ResultsA total of 150 HCPs completed the survey, including neurologists, geriatricians, and PD nurse specialists. Consensus was achieved for all 59 statements (100%). Key areas of agreement included early alignment of treatment with individual patient goals, the need for routine monitoring using standardised tools, timely initiation of adjunctive therapies, and the importance of accessible, ongoing patient and caregiver education.ConclusionsThis Delphi consensus provides a set of expert-derived, clinically applicable recommendations to support proactive and individualised management of PD. Adoption of these practices may enhance the recognition and treatment of motor fluctuations, improve patient quality of life, and support better long-term outcomes.
We comment here on the recently published paper by Ostentag et al., 2026, which examined self-reported environmental exposures in a group of patients with Parkinson's Disease (PD). Patients with -associated Parkinson's D...We comment here on the recently published paper by Ostentag et al., 2026, which examined self-reported environmental exposures in a group of patients with Parkinson's Disease (PD). Patients with -associated Parkinson's Disease (PD) were two times more likely to have been exposed to occupational pesticides compared to those with idiopathic PD, while there was no difference for any other exposure between the two groups. Combined with previous work, these findings suggest that pathogenic variant status in combination with exposure to pesticides leads to a high risk of developing PD, and have several implications: at the genetic epidemiological level, they provide a partial explanation for the missing penetrance of pathogenic variants; at the biological level, they suggest that the biological mechanisms of pathogenicity conferred by the genetic predisposition and the environmental exposure may converge on the same pathways, potentially involving the interplay between lysosomal and mitochondrial function; at the public health level, they suggest that exposure to even low levels of environmental toxins may be especially deleterious for genetically susceptible individuals with pathogenic variants. Further studies are needed to verify these results using rigorous methods for exposure ascertainment, to identify the exact class of substances underlying this association and their biological mechanisms in this context, and to determine the exposure levels that could be considered safe in this vulnerable population.
BackgroundHigh intensity interval training (HIIT) involves vigorous intensity exercise bouts interspersed with low intensity bouts. Despite growing interest, the optimal dosage and clinical adaptability of HIIT in Parkin...BackgroundHigh intensity interval training (HIIT) involves vigorous intensity exercise bouts interspersed with low intensity bouts. Despite growing interest, the optimal dosage and clinical adaptability of HIIT in Parkinson's disease (PD) remain unclear. This scoping review synthesized the literature on systemic adaptations underlying HIIT in PD and developed a clinical framework while considering chronotropic incompetence, orthostatic hypotension, and disease progression.MethodsThree databases were searched for studies that incorporated HIIT interventions in PD. The Template for Intervention Description and Replication checklist was used to characterize the quality of intervention reporting.ResultsA total of 285 studies were screened, of which 10 studies were included. HIIT was administered 2-3 times/week for 30-60 min/session over 8-12 weeks. Seven studies used moderate-volume HIIT and three studies used high-volume HIIT protocols. The quality of intervention reporting was fair to good. HIIT improved cardiorespiratory fitness, motor severity, and functional mobility in PD, however, improvements were comparable to moderate intensity continuous training (MICT). HIIT may facilitate neuroplasticity by increasing brain-derived neurotrophic factor levels and dopamine transporter uptake. We recommend that HIIT programs for individuals with autonomic dysfunction use individualized heart rate targets, and perceived exertion for determining exercise intensity, and incorporate longer duration programs (>12 weeks).ConclusionHIIT is a well-tolerated intervention that may improve cardiorespiratory fitness, disease severity, and certain neurobiological markers in mild-moderate PD, with benefits similar to MICT. Larger trials comparing different HIIT volumes are needed to identify optimal exercise volume to inform individualized exercise prescription.
Over the past 25 years, a prevailing clinical dogma has held that significant cognitive impairment constitutes a contraindication to the use of Deep Brain Stimulation in Parkinson's disease. Whilst multiple studies, excl...Over the past 25 years, a prevailing clinical dogma has held that significant cognitive impairment constitutes a contraindication to the use of Deep Brain Stimulation in Parkinson's disease. Whilst multiple studies, excluding such patients, have repeatedly emphasised the motoric benefits of this approach, less consideration has been given to the consequences of excluding this cohort. However, emerging evidence suggests that Deep Brain Stimulation in Parkinson's Disease patients with moderate cognitive impairment not only allows for significant reductions in dopaminergic therapy (typically alleviating many non-motor symptoms) but also favours survival and reduced admissions into institutional care. These small studies have not demonstrated significantly increased surgical or stimulation related complications in such patients and would suggest that further prospective studies, specifically evaluating this approach are warranted. Indeed, in the absence of a successful disease modifying therapy, exclusion from Deep Brain Stimulation often commits these advanced patients to a trajectory of ineffective pharmacological complexity. Alternative infusion therapies are associated with high discontinuation rates whilst escalating dopaminergic therapy, frequently exacerbates non-motor complications, including orthostatic hypotension, hallucinations, somnolence, and cognitive fluctuations. This flawed treatment strategy further accelerates functional decline, hospitalisation, and institutionalisation. Therefore, a reluctance or failure to offer Deep Brain Stimulation, where appropriate, may inadvertently consign patients to poorer long-term outcomes.
ObjectiveParkinson's disease (PD) frequently involves dysphagia, yet real-world longitudinal data capturing its progression and response to clinical care remain limited. Most prior studies exclude treated patients or rel...ObjectiveParkinson's disease (PD) frequently involves dysphagia, yet real-world longitudinal data capturing its progression and response to clinical care remain limited. Most prior studies exclude treated patients or rely solely on subjective or cross-sectional data. This study investigates long-term changes in swallowing physiology and diet in a pragmatic, treated PD population.MethodsWe retrospectively reviewed patients with PD who underwent at least two videofluoroscopic swallow studies (VFSS) ≥ 1 year apart at a tertiary laryngology center. Individuals with comorbid neurologic or structural disease were excluded. Standardized metrics included the Dynamic Imaging Grade of Swallowing Toxicity (DIGEST), Penetration Aspiration Scale (PAS), Functional Oral Intake Scale (FOIS), and International Dysphagia Diet Standardization Initiative (IDDSI), with kinematic analysis of Pharyngeal Constriction Ratio (PCR) and Maximum Pharyngoesophageal Segment Opening (PESmax). Ordinal outcomes were compared using Wilcoxon signed-rank tests; kinematic changes were analyzed with paired -tests.ResultsNineteen patients (mean age 79.4 years, 73% male) completed 38 VFSS over a mean 2.6-year interval. Despite an average of 9.7 swallow therapy sessions per patient, significant declines were observed in PESmax ( < 0.001), DIGEST Overall ( = 0.024), Efficiency ( = 0.039), and IDDSI solids ( = 0.041). Subgroup analysis of mild-to-moderate PD (H&Y 1-3) showed similar trends.ConclusionSwallowing function deteriorates over time in PD, even with treatment. This study highlights the value of instrumental reassessment and supports proactive, longitudinal management in real-world care settings.
van der Gaag BL, van Wetering J, Morella ML
… +12 more, Breve JJ, Reijner N, Pfeifer J, Simando A, van Hilten JJ, Berendse HW, Rozemuller AJ, Bugiani M, Kustermann T, Machado V, Britschgi M, van de Berg WD
BackgroundAlpha-synuclein can be detected in skin biopsies of individuals with synucleinopathies. However, quantitative data of total and phosphorylated Serine 129 (pS129) alpha-synuclein in skin biopsies are scarce.Obje...BackgroundAlpha-synuclein can be detected in skin biopsies of individuals with synucleinopathies. However, quantitative data of total and phosphorylated Serine 129 (pS129) alpha-synuclein in skin biopsies are scarce.ObjectiveWe aimed to investigate the biomarker potential of quantitative total and pS129 alpha-synuclein measurements in skin biopsies from people with synucleinopathies and controls.MethodsWe developed and validated AlphaLISA™ immunoassays to determine total and pS129 alpha-synuclein concentrations. Postmortem skin biopsies of Parkinson's disease (PD: n = 18), Dementia with Lewy bodies (DLB: n = 3), Multiple System Atrophy (MSA: n = 5) and control (n = 5) subjects were collected at the cervical vertebra C7. Brain tissues (middle temporal gyrus and substantia nigra) were collected from these same cases. In addition, skin biopsies of controls (n = 20) and PD cases (n = 40) were obtained from the ProPark cohort.ResultsTotal and pSer129 alpha-synuclein could be robustly detected and quantified in all skin samples. We observed a trend towards increased total (+58%, p = 0.055) and pS129 (+131%, p = 0.060) alpha-synuclein skin concentrations in synucleinopathy cases compared to controls. We found no correlations between pS129 alpha-synuclein concentrations in paired brain and skin tissues from the same donors. pS129 alpha-synuclein concentrations were similar for clinical PD cases and controls and there was no correlation with motor symptom severity (UPDRS-III).ConclusionsThese findings highlight that total and pS129 alpha-synuclein can be biochemically quantified in skin biopsies, but warrant further validation and investigation to asses its potential as a diagnostic biomarker in clinical cohorts.
IntroductionExercise can improve outcomes for people with Parkinson's. Telerehabilitation (TR) may lower costs and maximise clinician time but its efficacy for gait and balance in early Parkinson's is uncertain. We condu...IntroductionExercise can improve outcomes for people with Parkinson's. Telerehabilitation (TR) may lower costs and maximise clinician time but its efficacy for gait and balance in early Parkinson's is uncertain. We conducted a randomized controlled feasibility trial of individualised real-time physiotherapy delivered via videoconference.MethodsWe recruited people with early (<4 years' duration) Parkinson's from 2 English NHS hospitals. The TR group had 1 × 60 min, 4 × 30 min video calls and 2 × 10 min calls. These calls occurred within 12 weeks of randomization. Experienced physiotherapists prescribed individualized exercises. The usual care group received standard exercise advice from their physician. Physical activity was measured using Fitbit Inspire. A qualitative process evaluation was undertaken.Results84 people were screened, 64 were eligible and 40 recruited. 21 and 19 were randomized to TR and usual care respectively. 90% of study instruments were completed per protocol.Median [interquartile range; IQR] change in Unified Parkinson's Disease Rating Scale (UPDRS) at six months was -3.5 [-8 to 2.5] for the TR group and 7 [0 to 17] for usual care, effect size (Cohen's D = -0.537). Median [IQR] change in weekly step count was 4215 [-8769 to 19664] for the TR group versus -2185 [-10764 to 3143] for usual care (Cohen's D = 0.198). Participants found the intervention acceptable. Most participants were confident in using the videoconference systems.ConclusionA definitive trial of TR for early Parkinson's is feasible. UPDRS and step count are suitable outcomes.
Fullard ME, Shelton E, Dafoe A
… +3 more, Kern DS, Morris MA, Matlock DD
J Parkinsons Dis
· 2026 May · PMID 41706627
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BackgroundThe decision to undergo deep brain stimulation (DBS) surgery for patients with Parkinson's disease (PD) is often challenging and complex. Decisional outcomes may be improved by using decisional support tools th...BackgroundThe decision to undergo deep brain stimulation (DBS) surgery for patients with Parkinson's disease (PD) is often challenging and complex. Decisional outcomes may be improved by using decisional support tools that foster shared decision making.ObjectiveThe objective of this study was to develop a decision aid for PD patients considering DBS surgery and evaluate its acceptability.MethodsThe decision aid was developed using an evidence-based and systematic approach. The steps in development included a needs assessment, literature review, development of a decision aid prototype, and testing of the prototype with surveys for acceptability in a clinic setting.ResultsA total of 136 participants with PD participated in this study. The needs assessment included 57 participants who completed the decisional conflict scale with a mean score of 35.3, indicating high decisional conflict. After development, initial testing of the decision aid was completed by 22 participants (16 on paper version and 6 on interactive website version). Subsequently, 46 PD participants evaluated the decision aid for acceptability. Eighty seven percent of participants agreed or strongly agreed that they were satisfied with the quality of the decision aid. Most participants found the language, amount of information, length, balance, and risk and benefits section acceptable.ConclusionWe determined that PD patients undergoing DBS evaluation experience high decisional conflict. We subsequently created a DBS decision aid to increase knowledge, manage expectations, clarify values, and facilitate shared decision making. The decision aid was acceptable to PD patients with and without DBS.
BackgroundHandwriting changes are recognised as an early manifestation of Parkinson's disease. Whilst isolated rapid eye movement sleep behaviour disorder (iRBD) is strongly associated with future Parkinson's diagnosis,...BackgroundHandwriting changes are recognised as an early manifestation of Parkinson's disease. Whilst isolated rapid eye movement sleep behaviour disorder (iRBD) is strongly associated with future Parkinson's diagnosis, changes in handwriting remain under-explored.ObjectiveTo assess the handwriting of people with iRBD and develop a rating scale for detection of early disease clinical hallmarks.MethodsCross-sectional study involving 33 people with polysomnography-confirmed iRBD and 29 controls. Participants copied a standard sentence using pen and paper. A graphologist analysed each script blindly and designed a scale based on observed abnormal patterns which included: micrographia, sentence slope, hidden tremor, retracing, resting marks, irregular shape, excessive pen pressure, and inconsistent word spacing. Each item was scored 0/1 based on their absence/presence. Separately, three blinded movement disorders experts assessed the scripts based on their global clinical impression as well as using the rating scale.ResultsPeople with iRBD were slower to complete the task than controls (76.70 s (SD = 30.39) vs 61 s (SD = 10.71); p = 0.004). Hidden tremor was the most common feature amongst the iRBD group (72.0% vs 34.5%; p = 0.005), followed by sentence slope (60% vs 24% p = 0.005) and pen pressure (48% vs 14%; p = 0.006). Micrographia was observed in both groups (iRBD 45.4%, controls 41.4% p = 0.801). Classification accuracy of the scale for iRBD was higher than expert global assessment (AUC 0.76 vs AUC 0.62; p = 0.029).ConclusionsWriting speed, tremor, pen pressure and sentence slope are handwriting features that warrant further investigation to define early patterns in people with iRBD.