The Korean Dementia Registry:

“KoDeR”

Presenter: Seonjeong Byun

Deputy Director of National Institute of Dementia, South Korea

sjbyun@nid.or.kr

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

Thank you

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