dementia registry
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2022 ◽  
Vol 37 ◽  
pp. 153331752110671
Author(s):  
Sio Mui Wong ◽  
Wen Zeng ◽  
Iek Long Lo
Keyword(s):  

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Juraj Secnik ◽  
Hong Xu ◽  
Emilia Schwertner ◽  
Niklas Hammar ◽  
Michael Alvarsson ◽  
...  

Abstract Background The effect of antidiabetic medication on cognitive function is unclear. We analyzed the association between five antidiabetic drugs and change in Mini-Mental State Examination (MMSE) scores in patients with diabetes and dementia. Methods Using the Swedish Dementia Registry and four supplementary Swedish registers/databases, we identified 1873 patients (4732 observations) with diagnosis of type 2 diabetes (diabetes) and Alzheimer’s disease or mixed-pathology dementia who were followed up at least once after dementia diagnosis. Use of metformin, insulin, sulfonylurea, thiazolidinediones (TZD), and dipeptidyl-peptidase-4 inhibitors (DPP-4i) was identified at baseline. Prevalent-user, incident-user, and drug-drug cohorts were sampled, and propensity-score matching was used to analyze comparable subjects. Beta coefficients with 95% confidence intervals (CI) from the random intercept and slope linear mixed-effects models determined the association between the use of antidiabetic medications and decline in MMSE score points between the follow-ups. Inverse-probability weighting was used to account for patient dropout. Results Compared to non-users, prevalent users of metformin (beta 0.89, 95% CI 0.44; 1.33) and DPP-4i (0.72, 0.06; 1.37) experienced a slower cognitive decline with time. Secondly, compared to DPP-4i, the use of insulin (−1.00, −1.95; −0.04) and sulfonylureas (−1.19; −2.33; −0.04) was associated with larger point-wise decrements in MMSE with annual intervals. Conclusions In this large cohort of patients with diabetes and dementia, the use of metformin and DPP-4i was associated with a slower decline in MMSE scores. Further examination of the cognitive effects of metformin and incretin-based medications is warranted.


2021 ◽  
Vol 17 (S10) ◽  
Author(s):  
Minh Tuan Hoang ◽  
Ingemar Kåreholt ◽  
Lena von Koch ◽  
Hong Xu ◽  
Juraj Secnik ◽  
...  

2021 ◽  
pp. 1-9
Author(s):  
Emma Lindgren ◽  
Josephine Sörenson ◽  
Carina Wattmo ◽  
Ingemar Kreholt ◽  
Katarina Nägga

Background: With a growing elderly population worldwide, the prevalence of dementia is rapidly increasing. Studies from high income countries have shown that belonging to a minority ethnic group increases the risk of health disadvantages. Objective: The aim of the present registry-based study was to identify potential differences in diagnostics, treatment, and care of individuals with dementia focusing on foreign-born in Sweden and the impact of country level socioeconomic position (SEP). Methods: The study was based on a large dataset from the Swedish Dementia Registry (SveDem) and the Swedish Tax Agency’s population registry. Data on demographic variables, cognitive tests, clinical assessments, medication, diagnosis, and interventions initiated at diagnosis were collected. Country level SEP was determined by country of birth as classified by World Bank Country and Lending groups. Results: Of 57,982 patients with dementia registered in SveDem, 7,171 (12.4%) were foreign-born. The foreign-born were significantly younger at diagnosis (p <  0.001), had a lower MMSE score (p <  0.001), lower odds of receiving a specific dementia diagnosis (p <  0.001), lower use of acetylcholinesterase inhibitors (p <  0.001), and overall a higher use of neuroleptics compared with the Swedish-born group. The lower SEP, the greater differences to Swedish-born were seen in many of the examined variables. Conclusion: There were significant differences in dementia diagnostics, treatment, and care between foreign-born and Swedish-born, a lower SEP indicating greater differences. Further research should focus on various socioeconomic aspects and health care outcomes for a more profound analysis of equity in dementia care.


2021 ◽  
Author(s):  
Michael Reichold ◽  
Miriam Hess ◽  
Peter L. Kolominsky-Rabas ◽  
Elmar Gräßel ◽  
Hans-Ulrich Prokosch

BACKGROUND Digital registries have shown to provide an efficient way better to understand the clinical complexity and long-term progression of diseases. The paperless way of electronic data collection during a patient interview saves both: time and resources. In the prospective multicenter 'Digital Dementia Registry Bavaria - digiDEM Bayern', interviews are also conducted on-site in rural areas with unreliable internet connectivity. It must be ensured that electronic data collection can still be performed there, and it is no need to fall back on paper-based questionnaires. Therefore, the EDC system REDCap offers, in addition to a web-based data collection solution, the option to collect data offline via an app and synchronize it afterward. OBJECTIVE This study evaluates the usability of the REDCap app as an offline electronic data collection option for a lay user group and examines the necessary technology acceptance using mobile devices for data collection. Thereby, the feasibility of the app-based offline data collection in the dementia registry project was evaluated before going live. METHODS The study was conducted with an exploratory mixed-method in the form of an on-site usability test with the 'Thinking Aloud' method combined with a tailored semi-standardized online questionnaire including System Usability Score (SUS). The acceptance of mobile devices for the data collection was surveyed based on the technology acceptance model (TAM) with five categories. RESULTS Using the Thinking Aloud method, usability problems were identified and solutions were derived therefore. The evaluation of the REDCap app resulted in a SUS score of 74, which represents 'good' usability. After evaluating the technology acceptance questionnaire, it can be stated that the lay user group is open to mobile devices as interview tools. CONCLUSIONS The usability evaluation results show that a lay user group like the data collecting partners in the digiDEM project can handle the REDCap app well overall. The usability test provided statements about positive aspects and was able to identify usability problems of the REDCap app. In addition, the current technology acceptance in the sample showed that heterogeneous groups of different ages with different experiences in handling mobile devices are also ready for the use of app-based EDC systems. Based on the results, it can be assumed that the offline use of an app-based EDC system on mobile devices is a viable solution to collect data in a registry-based research project.


2021 ◽  
Vol 51 (6) ◽  
pp. 988-992
Author(s):  
Xiaoping Lin ◽  
Kasey Wallis ◽  
Susannah Ahern ◽  
Henry Brodaty ◽  
Christopher Rowe ◽  
...  

2021 ◽  
Vol 12 (03) ◽  
pp. 551-563
Author(s):  
Michael Reichold ◽  
Nikolas Dietzel ◽  
Christina Chmelirsch ◽  
Peter L. Kolominsky-Rabas ◽  
Elmar Graessel ◽  
...  

Abstract Background Registries are an essential research tool to investigate the long-term course of diseases and their impact on the affected. The project digiDEM Bayern will set up a prospective dementia registry to collect long-term data of people with dementia and their caregivers in Bavaria (Germany) supported by more than 300 research partners. Objective The objective of this article is to outline an information technology (IT) architecture for the integration of a registry and comprehensive participant management in a dementia study. Measures to ensure high data quality, study governance, along with data privacy, and security are to be included in the architecture. Methods The architecture was developed based on an iterative, stakeholder-oriented process. The development was inspired by the Twin Peaks Model that focuses on the codevelopment of requirements and architecture. We gradually moved from a general to a detailed understanding of both the requirements and design through a series of iterations. The experience learned from the pilot phase was integrated into a further iterative process of continuous improvement of the architecture. Results The infrastructure provides a standardized workflow to support the electronic data collection and trace each participant's study process. Therefore, the implementation consists of three systems: (1) electronic data capture system for Web-based or offline app-based data collection; (2) participant management system for the administration of the identity data of participants and research partners as well as of the overall study governance process; and (3) videoconferencing software for conducting interviews online. First experiences in the pilot phase have proven the feasibility of the framework. Conclusion This article outlines an IT architecture to integrate a registry and participant management in a dementia research project. The framework was discussed and developed with the involvement of numerous stakeholders. Due to its adaptability of used software systems, a transfer to other projects should be easily possible.


Author(s):  
Pornpatr A. Dharmasaroja ◽  
Jintana Assanasen ◽  
Sunsanee Pongpakdee ◽  
Kankamol Jaisin ◽  
Praween Lolekha ◽  
...  

<b><i>Introduction:</i></b> Molecular imaging has been developed and validated in Thai patients, comprising a portion of patients in the dementia registry. This should provide a more accurate diagnosis of the etiology of dementia, which was the focus of this study. <b><i>Methods:</i></b> This was a multicenter dementia study. The baseline characteristics, main presenting symptoms, and results of investigations and cognitive tests of the patients were electronically collected in the registry. Functional imaging and/or molecular imaging were performed in patients with an equivocal diagnosis of the causes of dementia, especially in atypical dementia or young onset dementia (YOD). <b><i>Results:</i></b> There were 454 patients in the study. The mean age of the patients was 78 years, with 60% female. Functional imaging and/or molecular imaging were performed in 57 patients (57/454 patients, 13%). The most common cause of dementia was Alzheimer’s disease (AD; 50%), followed by vascular dementia (VAD; 24%), dementia with Lewy bodies (6%), Parkinson’s disease dementia (6%), frontotemporal dementia (FTD; 2.6%), progressive supranuclear palsy (2%), multiple system atrophy (0.8%), and corticobasal syndrome (0.4%). YOD accounted for 17% (77/454 patients), with a mean age of 58 years. The causes of YOD were early onset amnestic AD (44%), VAD (16%), behavioral variant FTD (8%), posterior cortical atrophy (6.5%), and logopenic variant primary progressive aphasia (5.2%). <b><i>Conclusion:</i></b> AD was the most common cause of dementia in Thai patients and the distribution of other types of dementia and main presenting symptoms were similar to previous reports in Western patients; however, the proportion of YOD was higher.


2021 ◽  
pp. 1-10
Author(s):  
Emilia Schwertner ◽  
Renata Zelic ◽  
Juraj Secnik ◽  
Björn Johansson ◽  
Bengt Winblad ◽  
...  

Background: In Sweden, 2,296,000 firearms were legally owned by private persons in 2017 and there were 150,000 persons living with a dementia diagnosis. A proportion of these persons owning a firearm may pose safety concerns. Objective: The aim was to describe firearm ownership in persons with dementia in Sweden and examine which characteristics are explaining physicians’ decision to report a person to the police as unsuitable to possess a firearm. Methods: This was a registry-based observational study. 65,717 persons with dementia registered in the Swedish Dementia Registry were included in the study. Logistic regression was used to evaluate which of the persons’ characteristics were most important in predicting the likelihood of being reported as unsuitable to possess a firearm. Relative importance of predictors was quantified using standardized coefficients (SC) and dominance analysis (DA). Results: Out of 53,384 persons with dementia, 1,823 owned a firearm and 419 were reported to the police as unsuitable owners. Firearm owners were predominantly younger, males, living alone, and without assistance of homecare. The most important predictors of being reported to the police were: living with another person (SC = 0.23), frontotemporal dementia (SC = 0.18), antipsychotics prescription (SC = 0.18), being diagnosed in a memory/cognitive clinic (SC = –0.27), female gender (SC = 0.18), mild (SC = –0.25) and moderate (SC = –0.21) dementia, and hypnotics prescription (SC = 0.17). Conclusion: Firearm owners with dementia were mostly younger males who were still living more independent lives. The decision to remove a weapon was not solely based on a diagnosis of dementia but a combination of factors was considered.


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