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The Korean Dementia Registry:
“KoDeR”
Presenter: Seonjeong Byun
Deputy Director of National Institute of Dementia, South Korea
Aims to build a dementia registry
▶ Epidemiology of dementia ▶ Dementia services and care
▶ Research on dementia ▶ Policies and heath economics
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
Pitfalls of dementia registry
Diagnostic reliabilityDiagnostic reliability
Limited and inconsistent scope
Limited and inconsistent scope
Error and biasError and bias
Inherent difficulties in the collection of
data
Inherent difficulties in the collection of
data
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
Existing dementia registries in Korea
Seoul & Daegu Provincial Dementia Database
Fragmented
Non-standardization
No. of Pt553,403
No. of Pt457,102
≠
Discrepancy even in the number of dementia patient
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
Background
Dementia ANSIM* centers
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
256NATIONWIDE
LOCAL DEMENTIA CENTERS
Services provided in Dementia ANSIM Centers
*ANSIM means “relief” in Korean
Post-diagnosis service: Dementia-related service guide and
linkage
Early dementia screening and
diagnosis
Prevention DiagnosisPost-diagnosis service
Integrated Care
Monitoring & Management
1:1 individualized case management
Dementia shelter(adult daycare center) & cafe
Introduction
Background
ANSYS: Dementia ANSIM Integrated System
Registration form
Dashboard
Personal page
Future plan
Conclusion
Aim
Enhancing user authentication system
▪ Personal accredited certificate logon
▪ 6 level system interface access privilege system
▪ I/F Materialization of user authentication
1) Support systematic and standardized work of Dementia Ansim Center2) Quality management of supportive services for PWD & family and missing prevention
of dementia management3) Enhancement of KDO by managing & utilizing dementia-related DB
Enhancing Authentication
Personal information encryption for users
▪ Application of sensitive data encryption solution
▪ Application of network section encryption
▪ Implementation of intrusion detection solution & web firewall
Data Security
Displaying status & trends chart
▪ Comprehensive management via early diagnosis record & intensive counseling
▪ Provision & management of 133 specific services
Personalized & IntegratedProviding 365*24 seamless services
▪ Establishing Active-Standby ▪ Load balancing from Client Session
to multi-web servers▪ Establishing server monitoring
system in real time
Providing seamless services
ANSYS
Registration form
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
Socio-demographics
Marrital status/living arrangements
Eligibility of receiving LTC benefits
Cognitive diagnosis / medication
Comorbidity & health condition
History of wandering
Older adults with dementia, MCI, and NC
Information about care giver
Registration form
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
Socio-demographics
Living arrangements
Care burden
Caring period
Family member caring elderly with dementia
Relationship with patient
Informed consent templete
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
Personal summary pageDiagnostic status
DemographicsSocioeconomic status
Reservation status Diagnostic test results
Service utilization status
Status of refer to other resources
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
Personal summary pagePersonal summary pageDemographicsContact information
Summary ofCare burden analysis
Time trends of care burdenEducation and relaxation programsSelf-help groups
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
National dementia monitoring dashboard
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
National dementia monitoring dashboard
Current state of KoDeR
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
Number of registered people
Care giverService target elderly
Number of system users
System users
913,603179,044More than 100,000↑/month
Older adults
(By July 10th. 2018)
Elderly with dementia
The Future of KoDeR
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
KoDeR
1:1 individualized case management
Early dementia screening and consultation
Dementia parters management system
Missing person DB
Education history management system
DB regardingLTCI, welfare service
ANSIM portal service
Medical insurance DB
The Korean Dementia Registry
Funded by governmentBackground
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
The world's largest, fastest growing public big data regarding dementia
Standardized diagnosis protocol → Reliable diagnosis
Advantageous position to capturing almost all diagnosed cases of dementia in Korea
KoDeR
Twelve Recommendations for Dementia Registries
Background
Introduction
Registration form
Dashboard
Personal page
Future plan
Conclusion
1. Aim for dementia registries to be established in all countries, including lower
and middle income countries
2. Aim for international standardisation of registries
3. Ensure sufficient funding and sustainability of a registry
4. Define and document the purpose of the registry
5. Develop leadership/governance structure and registry policies
6. Develop adequate infrastructure for data entry, storage and access
7. Identify data sources and data collection procedures
8. Define the registry population, including case definition
9. Decide on the type of consent process
10.Decide on the scope of data collection and data collection instruments
11.Set up quality control procedures
12.Continually re-evaluate purpose and operation of the registry