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See detailRetrograde Procedural Memory in Parkinson’s Disease: A Cross-Sectional, Case-Control Study
Pauly, Laure UL; Pauly, Claire UL; Hansen, Maxime UL et al

in Journal of Parkinson's Disease (2022)

Background: The analysis of the procedural memory is particularly relevant in neurodegenerative disorders like Parkinson’s disease, due to the central role of the basal ganglia in procedural memory. It ... [more ▼]

Background: The analysis of the procedural memory is particularly relevant in neurodegenerative disorders like Parkinson’s disease, due to the central role of the basal ganglia in procedural memory. It has been shown that anterograde procedural memory, the ability to learn a new skill, is impaired in Parkinson’s disease. However, retrograde procedural memory, the long-term retention and execution of skills learned in earlier life stages, has not yet been systematically investigated in Parkinson’s disease. Objective: This study aims to investigate retrograde procedural memory in people with Parkinson’s disease.We hypothesized that retrograde procedural memory is impaired in people with Parkinson’s disease compared to an age- and gender-matched control group. Methods: First, we developed the CUPRO evaluation system, an extended evaluation system based on the Cube Copying Test, to distinguish the cube copying procedure, representing functioning of retrograde procedural memory, and the final result, representing the visuo-constructive abilities. Development of the evaluation system included tests of discriminant validity. Results: Comparing people with typical Parkinson’s disease (n = 201) with age- and gender-matched control subjects (n = 201), we identified cube copying performance to be significantly impaired in people with Parkinson’s disease (p = 0.008) No significant correlation was observed between retrograde procedural memory and disease duration. Conclusion: We demonstrated lower cube copying performance in people with Parkinson’s disease compared to control subjects, which suggests an impaired functioning of retrograde procedural memory in Parkinson’s disease. [less ▲]

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See detailRetrograde Procedural Memory in Parkinson's Disease
Pauly, Laure UL; Pauly, Claire UL; Hansen, Maxime UL et al

Poster (2022, March)

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See detailParkinson's Disease progression, resilience and inflammation markers during the COVID-19 pandemic
Pauly, Claire UL; Glaab, Enrico UL; Hansen, Maxime UL et al

in Movement Disorders (2022), in press (doi: 10.1002/mds.29212)(in press),

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See detailSmart Scheduling (SMASCH): multi-appointment scheduling system for longitudinal clinical research studies.
Vega Moreno, Carlos Gonzalo UL; Gawron, Piotr UL; Lebioda, Jacek UL et al

in JAMIA open (2022), 5(2), 038

OBJECTIVE: Facilitate the multi-appointment scheduling problems (MASPs) characteristic of longitudinal clinical research studies. Additional goals include: reducing management time, optimizing clinical ... [more ▼]

OBJECTIVE: Facilitate the multi-appointment scheduling problems (MASPs) characteristic of longitudinal clinical research studies. Additional goals include: reducing management time, optimizing clinical resources, and securing personally identifiable information. MATERIALS AND METHODS: Following a model view controller architecture, we developed a web-based tool written in Python 3. RESULTS: Smart Scheduling (SMASCH) system facilitates clinical research and integrated care programs in Luxembourg, providing features to better manage MASPs and speed up management tasks. It is available both as a Linux package and Docker image (https://smasch.pages.uni.lu). DISCUSSION: The long-term requirements of longitudinal clinical research studies justify the employment of flexible and well-maintained frameworks and libraries through an iterative software life-cycle suited to respond to rapidly changing scenarios. CONCLUSIONS: SMASCH is a free and open-source scheduling system for clinical studies able to satisfy recent data regulations providing features for better data accountability. Better scheduling systems can help optimize several metrics that ultimately affect the success of clinical studies. [less ▲]

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See detailDeterminants of Self-Stigma in People with Parkinson's Disease: A Mixed Methods Scoping Review
Hanff, Anne-Marie UL; Leist, Anja UL; Fritz, Joëlle UL et al

in Journal of Parkinson's Disease (2021)

Background: Self-stigma in people with Parkinson's disease (PD) can substantially impact quality of life and possibilities for social participation. An integrative analysis of determinants of self-stigma ... [more ▼]

Background: Self-stigma in people with Parkinson's disease (PD) can substantially impact quality of life and possibilities for social participation. An integrative analysis of determinants of self-stigma has been lacking. Objective: We sought to explore which complementary insights from qualitative and quantitative studies, as well as from expert consultation, could be gained. Methods: An established mixed methods study design was employed to first conduct a mixed methods scoping review of published qualitative and quantitative literature, and then consult with experts to arrive at an exhaustive list of determinants of self-stigma after a thematic synthesis. Results: A total of 87 unique determinants of self-stigma were identified. Quantitative studies and expert consultations mainly identified personal determinants of people with self-stigma (e.g., age, anxiety, or apathy). In contrast, qualitative studies identified social situations associated with self-stigma (e.g., joint meals of people with typical PD with others). Notably, self-stigma of people with PD was found to be particularly salient in unfamiliar places, at the working place or in contact with people without PD. Across methods, cognitive impairment, tremor, and abnormal walk and unsteady gait, respectively, were associated with self-stigma. Conclusion: The mixed method study design yielded complementary insights, but also factors commonly associated with self-stigma across methods. Future prioritization exercises may gain further insights into self-stigma of people with PD. Facilitating social encounters by both addressing needs of affected people and raising knowledge and public awareness may improve quality of life in people with PD [less ▲]

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See detailThe retrograde procedural memory in people with Parkinson’s disease with or without freezing of gait – a cross-sectional study
Pauly, Laure UL; Rauschenberger, Armin UL; Pauly, Claire UL et al

Poster (2021, September 17)

Objective: To investigate the retrograde procedural memory in people with typical Parkinson’s disease (PwP) with or without freezing of gait (FOG). We hypothesized that the retrograde procedural memory is ... [more ▼]

Objective: To investigate the retrograde procedural memory in people with typical Parkinson’s disease (PwP) with or without freezing of gait (FOG). We hypothesized that the retrograde procedural memory is more strongly impaired in patients with FOG (FOG+) than in patients without FOG (FOG-). Background: Given that cognitive functions, like executive control and automaticity, are crucial for mobility, it is of great importance to get a deeper knowledge of the cognitive impairment that may interfere with walking and causing gait disturbances in PwP, i.e. FOG. The integrity of retrograde procedural memory, the ability to execute skills that have been learned in earlier life stages, is essential for a person’s ability to complete routine, procedural activities like walking. As FOG is characterized as a de-automatization disorder, we hypothesized an impairment of the retrograde procedural memory in patients with FOG. Methods: A total of 194 patients from the Luxembourg Parkinson’s study were included into the cross-sectional study. All patients were assigned to the FOG+ / FOG- groups based on a semi-structured interview conducted by a study physician. The extended evaluation system of the cube copying test was applied to evaluate both the cube-drawing procedure, representing the retrograde procedural memory, and the final result, representing the visuo-constructive abilities (Pauly et al., 2020, MDS abstract). We compared the cube copying performance of n=97 FOG+ with n=97 age-, gender- and education-matched FOG-. Results: FOG+ scored lower on the cube copying procedure compared to the FOG- (p=0.027), which is suggestive of an impaired retrograde procedural memory in FOG+. No significant differences in the visuo-constructional abilities were detected (p=0.945). Conclusion: In line with FOG being considered a de-automatization of walking, a skill acquired in earlier life stages, the present results suggest that PwP with FOG have an impaired retrograde procedural memory in comparison to PwP without FOG. The results lend support to the ability of the extended evaluation system of the cube copying test to assess impaired retrograde procedural memory and help improve our understanding of behavioral symptoms in PwP. [less ▲]

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See detailQuantifying activities of daily living impairment in Parkinson’s disease using the Functional Activities Questionnaire
Becker, Sara; Pauly, Claire UL; Lawton, Michael et al

in Neurological Sciences (2021)

Objective Cognitive-driven activity of daily living (ADL) impairment in Parkinson’s disease (PD) is increasingly discussed as prodromal marker for dementia. Diagnostic properties of assessments for this ... [more ▼]

Objective Cognitive-driven activity of daily living (ADL) impairment in Parkinson’s disease (PD) is increasingly discussed as prodromal marker for dementia. Diagnostic properties of assessments for this specifc ADL impairment are sparsely investigated in PD. The ability of the Functional Activities Questionnaire (FAQ) for diferentiating between PD patients with normal cognition and with mild cognitive impairment (PD-MCI), according to informant and self-reports, was examined. Global cognitive function in groups with and without mild ADL impairment was compared according to diferent cut-ofs. Methods Multicenter data of 589 patients of an international cohort (CENTRE-PD) were analyzed. Analyses were run separately for informant-rated and self-rated FAQ. Receiver operating characteristic (ROC) analysis was conducted to defne the optimal FAQ cut-of for PD-MCI (≥1), and groups were additionally split according to reported FAQ cut-ofs for PD-MCI in the literature (≥3,≥5). Binary logistic regressions examined the efect of the Montreal Cognitive Assessment (MoCA) score in PD patients with and without mild ADL impairment. Results Two hundred and twenty-fve (38.2%) patients were classifed as PD-MCI. For all three cut-of values, sensitivity was moderate to low (<0.55), but specifcity was moderately high (>0.54) with a tendency of higher values for self-reported defcits. For the self-report, the cut-of≥3 showed a signifcant efect of the MoCA (B= −0.31, p=0.003), where FAQ≥3 patients had worse cognition. No efect for group diferences based on informant ratings was detected. Conclusion Our data argue that self-reported ADL impairments assessed by the FAQ show a relation to the severity of cognitive impairment in PD. [less ▲]

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See detailPrevalence of SARS-CoV-2 infection in the Luxembourgish population: the CON-VINCE study.
Snoeck, Chantal J.; Vaillant, Michel; Abdelrahman, Tamir et al

E-print/Working paper (2020)

BACKGROUND: After the World Health Organization declared the outbreak of coronavirus disease to be a public health emergency of international concern on January 30, 2020, the first SARS-CoV-2 infection ... [more ▼]

BACKGROUND: After the World Health Organization declared the outbreak of coronavirus disease to be a public health emergency of international concern on January 30, 2020, the first SARS-CoV-2 infection was detected in Luxembourg on February 29, 2020. Representative population-based data, including asymptomatic individuals for assessing the viral spread and immune response were, however, lacking worldwide. METHODS: Using a panel-based method, we implemented a representative sample of the Luxembourgish population based on age, gender and residency for testing for SARS-CoV-2 infection and antibody status in order to define prevalence irrespective of clinical symptoms. Participants were contacted via email to fill an online questionnaire before biosampling at local laboratories. All participants provided information related to clinical symptoms, epidemiology, socioeconomic and psychological assessments and underwent biosampling, rRT-PCR testing and serology for SARS-CoV-2. RESULTS: We included a total of 1862 individuals in our representative sample of the general Luxembourgish population. Of these, 5 individuals had a current positive result for infection with SARS-CoV-2 based on rRT-PCR. Four of these individuals were oligosymptomatic and one was asymptomatic. Overall we found a positive IgG antibody status in 35 individuals (1.97%), of which 11 reported to be tested positive by rRT-PCR for SARS-CoV-2 previously and showed in addition their IgG positive status also a positive status for IgA. Our data indicate a prevalence of 0.3% for active SARS-CoV-2 infection and an infection rate of 2.15% in the Luxembourgish population between 18 and 79 years of age. CONCLUSIONS: Luxembourgish residents show a low rate of acute infections after 7 weeks of confinement and present with an antibody profile indicative of a more recent immune response to SARS-CoV-2. All infected individuals were oligo- or asymptomatic. Bi-weekly follow-up visits over the next 2 months will inform about the viral spread by a- and oligosymptomatic carriers and the individual changes in the immune profile.Competing Interest StatementThe authors have declared no competing interest.Clinical TrialNCT04379297Funding StatementThe CON-VINCE Study is funded by the Research Fund Luxembourg (FNR; CON-VINCE) and the André Losch Foundation (Luxembourg).Author DeclarationsAll relevant ethical guidelines have been followed; any necessary IRB and/or ethics committee approvals have been obtained and details of the IRB/oversight body are included in the manuscript.YesAll necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived.YesI understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable.YesDue to ethical concerns, supporting data cannot be made openly available. [less ▲]

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See detailUnmet Needs of People With Parkinson's Disease and Their Caregivers During COVID-19-Related Confinement: An Explorative Secondary Data Analysis.
Hanff, Anne-Marie UL; Pauly, Claire UL; Pauly, Laure UL et al

in Frontiers in neurology (2020), 11

Self-perceived unmet needs in people with typical and atypical parkinsonism (PwP) and their caregivers, support network, personalized ways to address self-perceived unmet needs during confinement, as well ... [more ▼]

Self-perceived unmet needs in people with typical and atypical parkinsonism (PwP) and their caregivers, support network, personalized ways to address self-perceived unmet needs during confinement, as well as the prevalence of self-reported COVID-19 related symptoms, confirmed SARS-CoV-2 infection, and self-reported COVID-19 related hospitalization in Luxembourg and the Greater Region were assessed. From 18th March to 10th April 2020, 679 PwP were contacted by phone. Data was collected in the form of a semi-structured interview. The thematic synthesis identified 25 themes where PwP need to be supported in order to cope with consequences of the pandemic, and to adapt their daily and health-related activities. The present work highlights that in the context of personalized medicine, depending on the individual needs of support of the patient the identified self-perceived unmet needs were addressed in various ways ranging from one-directed information over interaction up to proactive counseling and monitoring. Family and health professionals, but also other support systems were taking care of the unmet needs of PwP (e.g., shopping, picking-up medication, etc.) during the pandemic. 7/606 PwP (1.15%) reported COVID-19 related symptoms, 4/606 (0.66%) underwent a rRT-PCR-based diagnostic test and 2/606 (0.33%) were confirmed as SARS-CoV-2 positive. None of these PwP reported being hospitalized due to COVID-19. Our results will allow health professionals to expand their services in a meaningful way i.e., personalize their support in the identified themes and thus improve the healthcare of PwP in times of crisis. [less ▲]

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See detailMental health impact of the confinement measures during the COVID-19 pandemic
Pauly, Claire UL; Schroeder, Valerie; Pauly, Laure UL et al

in Innovation in Aging (2020), 4(S1), 952

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See detailContributing Factors and Evolution of Impulse Control Disorder in the Luxembourg Parkinson Cohort.
Binck, Sylvia UL; Pauly, Claire UL; Vaillant, Michel et al

in Frontiers in neurology (2020), 11

Background: To establish the frequency of impulse control disorder (ICD) in Parkinson's disease (PD). Methods: Within the Luxembourg Parkinson's Study, PD patients were evaluated for ICD presence (score ≥ ... [more ▼]

Background: To establish the frequency of impulse control disorder (ICD) in Parkinson's disease (PD). Methods: Within the Luxembourg Parkinson's Study, PD patients were evaluated for ICD presence (score ≥ 1 on MDS-UPDRS I item 1.6), use of dopamine agonists (DA) and other medications. Results: 470 patients were enrolled. Among 217 patients without DA use, 6.9% scored positive for ICD, vs. 15.4% among 253 patients with DA use (p = 0.005). The regression analysis showed that age at PD diagnosis had only a minor impact on ICD occurrence, while there was no influence by gender or co-medications. The longitudinal study over 2 years in 156 patients demonstrated increasing ICD frequency in DA users (p = 0.005). Conclusion: This large and non-interventional study confirms that PD patients with DA treatment show higher frequency of ICD than patients without DA use. It newly demonstrates that ICD can develop independently from age, gender, or co-medications. [less ▲]

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See detailMultilingual Validation of the First French Version of Munich Dysphagia Test-Parkinson's Disease (MDT-PD) in the Luxembourg Parkinson's Study
Simons, Janine UL; Vaillant, Michel; Hipp Epouse D'amico, Géraldine UL et al

in Frontiers in Neurology (2019)

The Munich Dysphagia Test for Parkinson's disease (MDT-PD) was initially developed and validated in the German population as a highly sensitive and specific self-reported screening questionnaire to detect ... [more ▼]

The Munich Dysphagia Test for Parkinson's disease (MDT-PD) was initially developed and validated in the German population as a highly sensitive and specific self-reported screening questionnaire to detect early oropharyngeal symptoms and aspiration risk in patients with idiopathic Parkinson's disease (iPD). In order to make this tool accessible for prevention in the French speaking populations worldwide, we performed the first French translation and provide a linguistic and psychometric validation in the unique multilingual environment of the Luxembourg Parkinson's Study. [less ▲]

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See detailThe Luxembourg Parkinson’s Study: A Comprehensive Approach for Stratification and Early Diagnosis
Hipp Epouse D'amico, Géraldine UL; Vaillant, Michel; Diederich, Nico J. et al

in Frontiers in Aging Neuroscience (2018), 10

While genetic advances have successfully defined part of the complexity in Parkinson’s disease (PD), the clinical characterization of phenotypes remains challenging. Therapeutic trials and cohort studies ... [more ▼]

While genetic advances have successfully defined part of the complexity in Parkinson’s disease (PD), the clinical characterization of phenotypes remains challenging. Therapeutic trials and cohort studies typically include patients with earlier disease stages and exclude comorbidities, thus ignoring a substantial part of the real-world PD population. To account for these limitations, we implemented the Luxembourg PD study as a comprehensive clinical, molecular and device-based approach including patients with typical PD and atypical parkinsonism, irrespective of their disease stage, age, comorbidities, or linguistic background. To provide a large, longitudinally followed, and deeply phenotyped set of patients and controls for clinical and fundamental research on PD, we implemented an open-source digital platform that can be harmonized with international PD cohort studies. Our interests also reflect Luxembourg-specific areas of PD research, including vision, gait, and cognition. This effort is flanked by comprehensive biosampling efforts assuring high quality and sustained availability of body liquids and tissue biopsies. We provide evidence for the feasibility of such a cohort program with deep phenotyping and high quality biosampling on parkinsonism in an environment with structural specificities and alert the international research community to our willingness to collaborate with other centers. The combination of advanced clinical phenotyping approaches including device-based assessment will create a comprehensive assessment of the disease and its variants, its interaction with comorbidities and its progression. We envision the Luxembourg Parkinson’s study as an important research platform for defining early diagnosis and progression markers that translate into stratified treatment approaches. [less ▲]

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