Cohort Profile: The Dementia Registry in Macao.
Ontology highlight
ABSTRACT:
SUBMITTER: Wong SM
PROVIDER: S-EPMC10637169 | biostudies-literature | 2022 Jan-Dec
REPOSITORIES: biostudies-literature
Publications
Cohort Profile: The Dementia Registry in Macao.
Wong Sio Mui SM Zeng Wen W Lo Iek Long IL
American journal of Alzheimer's disease and other dementias 20220101
Similar Datasets
Project description:PurposeClinical quality registries (CQRs) are being established in many countries to monitor, benchmark, and report on the quality of dementia care over time. Case ascertainment can be challenging given that diagnosis occurs in a variety of settings. The Registry of Senior Australians (ROSA) includes a large cohort of people with dementia from all Australian states and territories identified using routinely collected aged care assessment data. In ROSA, assessment data are linked to information about aged and health service use, medicine dispensing, hospitalisations and the National Death Index. The ROSA dementia cohort was established to capture people for the Australian dementia CQR currently in development who may not be identified elsewhere.ParticipantsThere were 373 695 people with dementia identified in aged care assessments from 2008 to 2016. Cross-sectional analysis from the time of cohort entry (e.g. when first identified with dementia on an aged care assessment) indicates that individuals were 84.1 years old on average, and 63.1% were female. More than 44% were first identified at entry to permanent residential aged care. The cohort recorded more severe cognitive impairment at entry than other international dementia registries.Findings to dateThe cohort has so far been used to demonstrate a declining prevalence of dementia in individuals entering the aged care sector, examine trends in psychotropic medicine prescribing, and to examine the impact of dementia on aged care service use and outcomes.Future plansThe ROSA dementia cohort will be updated periodically and is a powerful resource both on its own and as a contributor to the Australian dementia CQR. Integration of the ROSA dementia cohort with the dementia CQR will ensure that people with dementia using aged care services can benefit from the ongoing monitoring and benchmarking of care that a registry can provide.
| S-EPMC7852970 | biostudies-literature
Project description:The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry) is a comprehensive registry of White male twin pairs born in the USA between 1917 and 1927, both of the twins having served in the military. The purpose was medical research and ultimately improved clinical care. The cohort was assembled in the early 1960s with identification of approximately 16,000 twin pairs, review of service records, a brief mailed questionnaire assessing zygosity, and a health survey largely comparable to questionnaires used at that time with Scandinavian twin registries. Subsequent large-scale data collection occurred in 1974, 1985 and 1998, repeating the health survey and including information on education, employment history and earnings. Self-reported data have been supplemented with mortality, disability and medical data through record linkage. Potential collaborators should access the study website [http://www.iom.edu/Activities/Veterans/TwinsStudy.aspx] or e-mail the Medical Follow-up Agency at [Twins@nas.edu]. Questionnaire data are being prepared for future archiving with the National Archive of Computerized Data on Aging (NACDA) at the Inter-University Consortium for Political and Social Research (ICPSR), University of Michigan, MI.
| S-EPMC4521123 | biostudies-other
Project description: Not available
| S-EPMC10858348 | biostudies-literature
Project description:PurposeClinical registries are essential for evaluation of surgical outcomes. The Schulthess Shoulder Arthroplasty Registry (SAR) was established in 2006 to evaluate safety, function, quality-of-life and patient satisfaction in patients undergoing shoulder arthroplasty.ParticipantsAdult patients undergoing anatomic or reverse shoulder joint replacement at the Schulthess Klinik, a high-volume, leading orthopaedic surgery centre in Zürich, Switzerland.Findings to dateBetween March 2006 and December 2019, the registry covered 98% of eligible operations. Overall, 2332 patients were enrolled with a total of 2796 operations and 11 147 person-years of follow-up. Mean age at baseline was 71 (range: 20-95), 65% were women. Most common indication was rotator cuff tears with osteoarthritis (42%) and the mean preoperative Constant Score was 31 (±15). The most frequent arthroplasty type was reverse, increasing from 61% in 2006-2010 to 86% in 2015-2019. Functional recovery peaked at 12-month postoperatively and did not show a clinically relevant deterioration during the first ten follow-up years. Since its establishment, the registry was used to address multiple pertinent clinical and methodological questions. Primary focus was on comparing different implant configurations (eg, glenosphere diameter) and surgical techniques (eg, latissimus dorsi transfer) to maximise functional recovery. Additionally, the cohort contributed to the determination of the clinical relevance and validity of radiological monitoring of cortical bone resorption and scapular notching. Finally, SAR data helped to demonstrate that returning to sports was among key patient expectations after reverse shoulder arthroplasty.Future plansAs first patients are approaching the 15 years follow-up landmark, the registry will continue providing essential data on long-term functional outcomes, implant stability, revision rates and aetiologies as well as patient satisfaction and quality-of-life. In addition to research and quality-control, the cohort data will be brought back to the patients by bolstering real-time clinical decision support.
| S-EPMC7692837 | biostudies-literature
Project description:ObjectiveWe aimed to investigate the differences in clinical characteristics and pharmacological treatment associated with the presence of diabetes in a large cohort of patients with dementia.Research design and methodsA cross-sectional registry-based study was conducted using data from the Swedish Dementia Registry (SveDem). Data on dementia diagnosis, dementia type, and demographic determinants were extracted from SveDem. Data from the Swedish Patient Register and Prescribed Drug Register were combined for the diagnosis of diabetes. Data on antidiabetic, dementia, cardiovascular, and psychotropic medications were extracted from the Swedish Prescribed Drug Register. Logistic regression was used to determine whether the variables were associated with diabetes after adjustment for confounders. In total, 29,630 patients were included in the study, and 4,881 (16.5%) of them received a diagnosis of diabetes.ResultsIn the fully adjusted model, diabetes was associated with lower age at dementia diagnosis (odds ratio [OR] 0.97 [99% CI 0.97-0.98]), male sex (1.41 [1.27-1.55]), vascular dementia (1.17 [1.01-1.36]), and mixed dementia (1.21 [1.06-1.39]). Dementia with Lewy bodies (0.64 [0.44-0.94]), Parkinson disease dementia (0.46 [0.28-0.75]), and treatment with antidepressants (0.85 [0.77-0.95]) were less common among patients with diabetes. Patients with diabetes who had Alzheimer disease obtained significantly less treatment with cholinesterase inhibitors (0.78 [0.63-0.95]) and memantine (0.68 [0.54-0.85]).ConclusionsPatients with diabetes were younger at dementia diagnosis and obtained less dementia medication for Alzheimer disease, suggesting less optimal dementia treatment. Future research should evaluate survival and differences in metabolic profile in patients with diabetes and different dementia disorders.
| S-EPMC5566285 | biostudies-literature
Project description:BACKGROUND:Patients with dementia might have higher risk for hemorrhagic complications with anticoagulant therapy prescribed for atrial fibrillation (AF). OBJECTIVE:This study assesses the risks and benefits of warfarin, antiplatelets, and no treatment in patients with dementia and AF. METHODS:Of 49,792 patients registered in the Swedish Dementia Registry 2007-2014, 8,096 (16%) had a previous diagnosis of AF. Cox proportional hazards models were used to calculate the risk for ischemic stroke (IS), nontraumatic intracranial hemorrhage, any-cause hemorrhage, and death. RESULTS:Out of the 8,096 dementia patients with AF, 2,143 (26%) received warfarin treatment, 2,975 (37%) antiplatelet treatment, and 2,978 (37%) had no antithrombotic treatment at the time of dementia diagnosis. Patients on warfarin had fewer IS than those without treatment (5.2% versus 8.7%; p < 0.001) with no differences compared to antiplatelets. In adjusted analyses, warfarin was associated with a lower risk for IS (HR 0.76, CI 0.59-0.98), while antiplatelets were associated with increased risk (HR 1.25, CI 1.01-1.54) compared to no treatment. For any-cause hemorrhage, there was a higher risk with warfarin (HR 1.28, CI 1.03-1.59) compared to antiplatelets. Warfarin and antiplatelets were associated with a lower risk for death compared to no treatment. CONCLUSIONS:Warfarin treatment in Swedish patients with dementia is associated with lower risk of IS and mortality, and a small increase in any-cause hemorrhage. This study supports the use of warfarin in appropriate cases in patients with dementia. The low percentage of patients on warfarin treatment indicates that further gains in stroke prevention are possible.
| S-EPMC5798527 | biostudies-literature
Project description:PurposeTo create a cohort with high specificity for moderate and severe rheumatic heart disease (RHD) in New Zealand, not reliant on International Classification of Diseases discharge coding. To describe the demography and cardiac profile of this historical and contemporary cohort.Design and participantsRetrospective identification of moderate or severe RHD with disease onset by 2019. Case identification from the following data sources: cardiac surgical databases, RHD case series, percutaneous balloon valvuloplasty databases, echocardiography databases, regional rheumatic fever registers and RHD clinic lists. The setting for this study was a high-income country with continued incidence of acute rheumatic fever (ARF).Findings to dateA Registry cohort of 4959 patients was established. The initial presentation was RHD without recognised prior ARF in 41%, and ARF in 59%. Ethnicity breakdown: Māori 38%, Pacific 33.5%, European 21.9%, other 6.7%. Ethnic disparities have changed significantly over time. Prior to 1960, RHD cases were 64.3% European, 25.3% Māori and 6.7% Pacific. However, in contrast, from 2010 to 2019, RHD cases were 10.7% European, 37.4% Māori and 47.2% Pacific.Follow-up showed 32% had changed region of residence within New Zealand from their initial presentation. At least one cardiac intervention (cardiac surgery, transcatheter balloon valvuloplasty) was undertaken in 64% of the cohort at a mean age of 40 years. 19.8% of the cohort had multiple cardiac interventions. At latest follow-up, 26.9% of the cohort died. Of those alive, the mean follow-up is 20.5+19.4 years. Māori and Pacific led governance groups have been established to provide data governance and oversight for the registry.Future plansDetailed mortality and morbidity of the registry cases will be defined by linkage to New Zealand national health data collections. The contemporary cohort of the registry will be available for future studies to improve clinical management and outcomes for the 3450 individuals living with chronic RHD.
| S-EPMC9809252 | biostudies-literature
Project description:BackgroundIt remains unclear whether the increased focus on improving healthcare and providing appropriate care for people with dementia has affected mortality.ObjectiveTo assess survival and to conduct a time trend analysis of annual mortality rate ratios (MRR) of dementia based on healthcare data from an entire national population.MethodsWe assessed survival and annual MRR in all residents of Denmark ≥65 years from 1996-2015 using longitudinal registry data on dementia status and demographics. For comparison, mortality and survival were calculated for acute ischemic heart disease (IHD) and cancer.ResultsThe population comprised 1,999,366 people (17,541,315 person years). There were 165,716 people (529,629 person years) registered with dementia, 131,321 of whom died. From 1996-2015, the age-adjusted MRR for dementia declined (women: 2.76 to 2.05; men: 3.10 to 1.99) at a similar rate to elderly people without dementia. The sex-, age-, and calendar-year-adjusted MRR was 2.91 (95%CI: 2.90-2.93) for people with dementia. MRR declined significantly more for acute IHD and cancer. In people with dementia, the five-year survival for most age-groups was at a similar level or lower as that for acute IHD and cancer.ConclusionAlthough mortality rates declined over the 20-year period, MRR stayed higher for people with dementia, while the MRR gap, compared with elderly people without dementia, remained unchanged. For the comparison, during the same period, the MRR gap narrowed between people with and without acute IHD and cancer. Consequently, initiatives for improving health and decreasing mortality in dementia are still highly relevant.
| S-EPMC7902977 | biostudies-literature
Project description:PurposeThe Swedish InfCareHIV cohort was established in 2003 to ensure equal and effective care of people living with HIV (PLHIV) and enable long-term follow-up. InfCareHIV functions equally as a decision support system as a quality registry, ensuring up-to-date data reported in real time.ParticipantsInfCareHIV includes data on >99% of all people with diagnosed HIV in Sweden and up to now 13 029 have been included in the cohort. InfCareHIV includes data on HIV-related biomarkers and antiretroviral therapies (ART) and also on demographics, patient-reported outcome measures and patient-reported experience measures.Findings to dateSweden was in 2015 the first country to reach the UNAIDS (United Nations Programme on HIV/AIDS)/WHO's 90-90-90 goals. Late diagnosis of HIV infection was identified as a key problem in the Swedish HIV-epidemic, and low-level HIV viraemia while on ART associated with all-cause mortality. Increased HIV RNA load in the cerebrospinal fluid (CSF) despite suppression of the plasma viral load was found in 5% of PLHIV, a phenomenon referred to as 'CSF viral escape'. Dolutegravir-based treatment in PLHIV with pre-existing nucleoside reverse transcriptase inhibitor-mutations was non-inferior to protease inhibitor-based regimens. An increase of transmitted drug resistance was observed in the InfCareHIV cohort. Lower efficacy for protease inhibitors was not due to lower adherence to treatment. Incidence of type 2 diabetes and insulin resistance was high in the ageing HIV population. Despite ART, the risk of infection-related cancer as well as lung cancer was increased in PLHIV compared with HIV-negative. PLHIV were less likely successfully treated for cervical precancer and more likely to have human papillomavirus types not included in current HPV vaccines. Self-reported sexual satisfaction in PLHIV is improving and is higher in women than men.Future plansInfCareHIV provides a unique base to study and further improve long-term treatment outcomes, comorbidity management and health-related quality of life in people with HIV in Sweden.
| S-EPMC10030896 | biostudies-literature
Project description:Background and purposeMortality is known to be markedly increased in people with dementia. However, the association between multiple chronic conditions and mortality in dementia is not well clarified. The aim of this study was to investigate the impact of somatic and psychiatric diseases on mortality in dementia compared with the general elderly population.MethodsUsing a cohort study design, nationwide registry data from 2006 to 2015 on dementia and psychiatric and somatic comorbidities defined by the Charlson Comorbidity Index (CCI) were linked. Impact of chronic conditions was assessed according to mortality rate ratios (MRRs) in all Danish residents aged ≥65 years with and without dementia.ResultsOur population comprised 1,518,917 people, of whom 114,109 people were registered with dementia. The MRRs was 2.70 (95% confidence interval 2.68, 2.72) in people with dementia after adjusting for sex, age, calendar year, and comorbidities. MRRs increased with higher CCI score, and when comparing people with a similar comorbidity load, MRRs were significantly higher for people with dementia.ConclusionsThe comorbidity load was associated with increased mortality in both people with and without dementia. Mortality in dementia remained increased, even after adjusting for psychiatric and chronic somatic comorbidities. Our findings suggest that dementia disorders alone contribute to excess mortality, which may be further increased by comorbidities.
| S-EPMC8251545 | biostudies-literature