Dementia registries around the globe and their applications: A systematic review

Krysińska, Karolina; Sachdev, Perminder S.; Breitner, John C.S.; Kivipelto, Miia; Kukull, Walter A.; Brodaty, Henry

doi:10.1016/j.jalz.2017.04.005

Cited by 77 publications

(87 citation statements)

References 78 publications

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“…A patient registry should be designed based on a purpose [36]. Krysinska et al stated that, the two factors of registry objective and investment are influenced by the design and scope of the registry [40]. The first step in designing a registry is to set realistic goals.…”

Section: Discussionmentioning

confidence: 99%

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The Main Infrastructure for Better Dental Implant Management: A Systematic Review on Dental Implant Registries

Naemi

Barikani

Shahmoradi³

2019

Preprint

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Background The importance of dental implant registry system has been well documented. However, no systematic review on the dental implant registry system can be found in the literature. Therefore, the aim of this study is to review the dental implant registry system to determine the goals, data elements, reports, data sources, capabilities and institutions that develop dental implant registry system.Methods A systematic study was conducted in PubMed, Scopus, Web of Science and Embase databases. Also, samples of dental implant registry system were searched in Google and were included into the study. For evaluating the dental implant registry system, all English language studies were examined without time limitation. Non-English studies and papers such as conference abstracts were excluded.Results The primary search identified 16905 articles. After eliminating duplicates, full texts of 53 retrieved articles were reviewed by the researchers and finally, 15 studies were included in this review. In this review, the goals of dental implant registry system were determined to be surveillance, complication management and etc. Also, the data elements of dental implant registry system were include patient information, implant information, etc.Conclusion The results of this study provide dentists and other stakeholders with useful dataset on the development of dental implant registry system. It also provides a framework of the goals, characteristics, data elements and reports, data sources, and capabilities of dental implant registry system. The establishment of dental implant registry system will allow the control of complications of dental implants in the future.Systematic review registration CRD42019126424

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Section: Discussionmentioning

confidence: 99%

“…The diversity of goals and features of registries complicates their comparison. Standard data and information coordination allow data comparison across countries and regions [40]. The data elements of registries should be determined to facilitate scientific disciplines to achieve their objectives [36].…”

Section: Discussionmentioning

confidence: 99%

The Main Infrastructure for Better Dental Implant Management: A Systematic Review on Dental Implant Registries

Naemi

Barikani

Shahmoradi³

2019

Preprint

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“…Dementia was identified as a priority area for development of a CQR in 2016 by the Australian Commission for Safety and Quality in Heath Care (ACSQHC), based on the high burden of disease, significant consequences of poor-quality care and support from relevant clinical and consumer organisations [21]. Several dementia CQRs have been established internationally, such as the Swedish Dementia Registry (SveDem), Norwegian Dementia Registry (NorKog), and the Danish Dementia Registry [22]. There is evidence that these dementia CQRs "facilitate better diagnosis, management, and care of people with dementia, as well as caregiver support, across the course of the illness" and have great potential to "reduce cost of dementia and improve standards of diagnosis and care" [22].…”

Section: Need For a Clinical Quality Registry For Dementia In Australiamentioning

confidence: 99%

“…Several dementia CQRs have been established internationally, such as the Swedish Dementia Registry (SveDem), Norwegian Dementia Registry (NorKog), and the Danish Dementia Registry [22]. There is evidence that these dementia CQRs "facilitate better diagnosis, management, and care of people with dementia, as well as caregiver support, across the course of the illness" and have great potential to "reduce cost of dementia and improve standards of diagnosis and care" [22].…”

Section: Need For a Clinical Quality Registry For Dementia In Australiamentioning

confidence: 99%

The protocol of a clinical quality registry for dementia and mild cognitive impairment (MCI): the Australian dementia network (ADNeT) Registry

et al. 2020

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Background Dementia was identified as a priority area for the development of a Clinical Quality Registry (CQR) in Australia in 2016. The Australian Dementia Network (ADNeT) Registry is being established as part of the ADNeT initiative, with the primary objective of collecting data to monitor and enhance the quality of care and patient outcomes for people diagnosed with either dementia or Mild Cognitive Impairment (MCI). A secondary aim is to facilitate the recruitment of participants into dementia research and trials. This paper describes the Registry protocol. Methods The ADNeT Registry is a prospective CQR of patients newly diagnosed with either dementia or MCI. Eligible patients will be identified initially from memory clinics and individual medical specialists (e.g., geriatricians, psychiatrists and neurologists) involved in the diagnosis of dementia. Participants will be recruited using either an opt-out approach or waiver of consent based on three key determinants (capacity, person responsible, and communication of diagnosis). Data will be collected from four sources: participating sites, registry participants, carers, and linkage with administrative datasets. It is anticipated that the Registry will recruit approximately 10,000 participants by the end of 2023. The ADNeT registry will be developed and implemented to comply with the national operating principles for CQRs and governed by the ADNeT Registry Steering Committee. Discussion The ADNeT Registry will provide important data on current clinical practice in the diagnosis, treatment and care of people with dementia and MCI in Australia as well as long-term outcomes among these people. These data will help to identify variations in clinical practice and patient outcomes and reasons underlying these variations, which in turn, will inform the development of interventions to improve care and outcomes for people with dementia and MCI.

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“…Although the development of radical therapeutic strategies remains critical, the importance of creating a registry system for individuals with normal cognitive function at a risk of AD cannot be understated. To ensure that clinical trials targeting mild cognitive impairment (MCI) and the preclinical/early stages of AD are conducted efficiently, it is necessary to establish more appropriate methods for large-scale clinical trial recruitment [ 4 ]. In clinical research aimed at preventing dementia, a large-scale registration system is necessary to make it scale to validate its efficacy.…”

Section: Introductionmentioning

confidence: 99%

Analysis of risk factors for mild cognitive impairment based on word list memory test results and questionnaire responses in healthy Japanese individuals registered in an online database

et al. 2018

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Although the development of effective therapeutic drugs and radical treatment options for dementia and Alzheimer’s disease (AD) remains urgent, progress in recent clinical trials of AD drugs has been less than adequate. In order to advance the progress of clinical trials, it is necessary to establish more efficient methods of recruitment. In Japan, there are registration systems stratified by mild cognitive impairment and preclinical and clinical stages of early and advanced stage dementia, but there is no registration system for healthy individuals yet. Therefore, in the present study, we developed a large-scale, internet-based health registry to investigate factors associated with cognitive function among registered participants. A total of 1038 participants completed the initial questionnaire and word list memory test. Among these participants, 353 individuals completed a second questionnaire and memory test. Stepwise multiple regression analysis was performed using IBM SPSS version 23.0 for Windows at a statistical significance level of p<0.05. We found that mood, motivation, and a decreased ability to perform activities of daily living were significantly associated with cognitive function. The results of the present study suggest that maintaining social involvement is important to prevent decreases in physical activity, daily function, mood, and motivation.

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Dementia registries around the globe and their applications: A systematic review

Cited by 77 publications

References 78 publications

The Main Infrastructure for Better Dental Implant Management: A Systematic Review on Dental Implant Registries

The Main Infrastructure for Better Dental Implant Management: A Systematic Review on Dental Implant Registries

The protocol of a clinical quality registry for dementia and mild cognitive impairment (MCI): the Australian dementia network (ADNeT) Registry

Analysis of risk factors for mild cognitive impairment based on word list memory test results and questionnaire responses in healthy Japanese individuals registered in an online database

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