B-cell depletion for the treatment of patients with amyotrophic lateral sclerosis (ALS) - A Randomized, Double-blind, Placebo controlled Pilot Study in Patients with Amyotrophic Lateral Sclerosis for the Evaluation of Efficacy and Safety of B-Cell Depletion with Rituximab (ABCD) - RituxALS01

Start Date30 May 2024

Sponsor / Collaborator

Deutsches Zentrum fr Neurodegenerative Erkrankungen e.V.

DRKS00032475 / SuspendedNot Applicable

Neurological manifestations of Long Covid-19 in Germany - an observational study (NEURO LC-19 DE) - NEURO LC-19 DE

Start Date31 Dec 2023

Sponsor / Collaborator

Deutsches Zentrum fr Neurodegenerative Erkrankungen e.V.

100 Clinical Results associated with Deutsches Zentrum fr Neurodegenerative Erkrankungen e.V.

0 Patents (Medical) associated with Deutsches Zentrum fr Neurodegenerative Erkrankungen e.V.

Literatures (Medical) associated with Deutsches Zentrum fr Neurodegenerative Erkrankungen e.V.

08 Oct 2024·Neurology

Predictors of Care Home Admission and Survival Rate in Patients With Syndromes Associated With Frontotemporal Lobar Degeneration in Europe

Article

Author: Stojmenović, Gorana Mandić ; Seelaar, Harro ; Krüger, Johanna ; Solje, Eino ; Moreno, Fermin ; Borroni, Barbara ; Barandiaran, Myriam ; Murley, Alexander G ; Ludolph, Albert C ; Graff, Caroline ; Anderl-Straub, Sarah ; Logroscino, Giancarlo ; Portaankorva, Anne M ; Zecca, Chiara ; Hartikainen, Päivi ; Otto, Markus ; Jelic, Vesna ; Rowe, James B ; Traykov, Latchezar D ; Dell'Abate, Maria Teresa ; Grassi, Mario ; Alberici, Antonella C ; Gabilondo, Alazne ; Mehrabian, Shima ; Rittman, Timothy ; Tarantino, Barbara ; Van Swieten, John C ; Ghidoni, Roberta ; Van Der Ende, Emma ; Stefanova, Elka

BACKGROUND AND OBJECTIVESData on care home admission and survival rates of patients with syndromes associated with frontotemporal lobar degeneration (FTLD) are limited. However, their estimation is essential to plan trials and assess the efficacy of intervention. Population-based registers provide unique samples for this estimate. The aim of this study was to assess care home admission rate, survival rate, and their predictors in incident patients with FTLD-associated syndromes from the European FRONTIERS register-based study.METHODSWe conducted a prospective longitudinal multinational observational registry study, considering incident patients with FTLD-associated syndromes diagnosed between June 1, 2018, and May 31, 2019, and followed for up to 5 years till May 31, 2023. We enrolled patients fulfilling diagnosis of the behavioral variant frontotemporal dementia (bvFTD), primary progressive aphasia (PPA), progressive supranuclear palsy (PSP) or corticobasal syndrome (CBS), and FTD with motor neuron disease (FTD-MND). Kaplan-Meier analysis and Cox multivariable regression models were used to assess care home admission and survival rates. The survival probability score (SPS) was computed based on independent predictors of survivorship.RESULTSA total of 266 incident patients with FTLD were included (mean age ± SD = 66.7 ± 9.0; female = 41.4%). The median care home admission rate was 97 months (95% CIs 86-98) from disease onset and 57 months (95% CIs 56-58) from diagnosis. The median survival was 90 months (95% CIs 77-97) from disease onset and 49 months (95% CIs 44-58) from diagnosis. Survival from diagnosis was shorter in FTD-MND (hazard ratio [HR] 4.59, 95% CIs 2.49-8.76, p < 0.001) and PSP/CBS (HR 1.56, 95% CIs 1.01-2.42, p = 0.044) compared with bvFTD; no differences between PPA and bvFTD were found. The SPS proved high accuracy in predicting 1-year survival probability (area under the receiver operating characteristic curve = 0.789, 95% CIs 0.69-0.87), when defined by age, European area of residency, extrapyramidal symptoms, and MND at diagnosis.DISCUSSIONIn FTLD-associated syndromes, survival rates differ according to clinical features and geography. The SPS was able to predict prognosis at individual patient level with an accuracy of ∼80% and may help to improve patient stratification in clinical trials. Future confirmatory studies considering different populations are needed.

06 Jul 2024·Innovation in Aging

The Perspective of Residents Living With Dementia Toward Their Built Environment: A Walking Interview Study in German Nursing Homes

Article

Author: Schmüdderich, Kathrin ; Holle, Bernhard ; Palm, Rebecca ; Roes, Martina ; Fahsold, Anne ; Verbeek, Hilde

AbstractBackground and ObjectivesIn long-term care, the built environment can help residents maintain activities of daily living and thus positively influence their quality of life. The adequacy of the built environment can be systematically assessed using assessment tools. The German Environmental Audit Tool (G-EAT) was translated and psychometrically tested for the German setting. Previous research has shown that the perspective of people living with dementia has not been fully considered in this adaptation. To explore the residents’ perspective, the question of how residents living with dementia experience the built environment of nursing homes was investigated.Research Design and MethodsWalking interviews were conducted with residents. Inclusion criteria for participation were the presence of dementia (medically diagnosed or indicated by symptoms) and the ability to express themselves verbally in German. For data analysis, the audio material was transcribed and supplemented by the researchers’ field notes and photographs. Data analysis followed an interpretative phenomenological approach.ResultsFourteen residents from 2 nursing homes participated in the walking interviews. A total of 3 themes were identified: (1) being able to maintain the feeling “to refurnish” or having to let it go, (2) experiencing the limits and potentials of being independent because of the built environment, and (3) living in a community of residents.Discussion and ImplicationsThe perspective of the living environment of people living with dementia in nursing homes adds to the knowledge of assessment-based data. Boundaries between physical and social environments are experienced as fluid by residents. They do not see their living space as limited to their living unit but describe the nursing home as a living environment. This broadens the perspective of existing structural definitions in the setting.

01 Apr 2024·Research on Aging

“This is Slowly Becoming my Interest…”: The Understanding of Leisure and Preferences for Leisure Activities of People Receiving Adult Day Services

Article

Author: Roes, Martina ; Van Haitsma, Kimberly ; Manietta, Christina ; Rommerskirch-Manietta, Mike ; Abbott, Katherine M. ; Purwins, Daniel

Currently it is unknown what people receiving adult day services (ADS) understand as leisure and the activities they prefer remain unknown. To address these gaps, we investigated the understanding of leisure of people receiving ADS. We conducted semistructured interviews with 15 people receiving ADS in Germany. Interviews were analyzed using reflexive thematic analysis. The sweet bitter symphony emphasizes the sensations that shape participant’s understanding of leisure. Young, wild & free! describes the types of preferred activities. Is this our last tango? refers to the barriers. Anchors aweigh! the [ongoing] voyage describes the process by which leisure is transferred from private domain to the ADS environment. The beginning is the end is the beginning illustrates the paradox of understanding the ADS as offering a form of leisure and the adaptation to engage in nonpreference-based activities. Our findings indicate the importance in offering leisure activities that enable preference-based engagement in the ADS.

100 Deals associated with Deutsches Zentrum fr Neurodegenerative Erkrankungen e.V.

100 Translational Medicine associated with Deutsches Zentrum fr Neurodegenerative Erkrankungen e.V.

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