|
Name
(Abbreviation) |
National Eye Database
(NED) |
|
Established since:
|
2007 |
|
Contact person: |
Dr. Goh Pik Pin, Consultant Ophthalmologist |
|
Address: |
Ophthalmology Department,
Selayang Hospital
Lebuhraya Selayang–Kepong, Batu Caves, Selangor |
|
Phone: |
603-61367788 ext 4069 |
|
Fax: |
603-61207564 |
|
Email: |
ned@acrm.org.my |
|
URL: |
www.acrm.org.my/ned |
|
Background: |
National Eye Database (NED) is a web based
disease clinical database, designed as a prospective, ongoing
systematic collection of data pertaining to specific visual
threatening eye diseases, such as cataract, diabetic
retinopathy, glaucoma, contact lens related corneal ulcer, and
outcome of cataract surgery. It also collects census to monitor
service performance by centre in a monthly basis.
In the first phase, it ahs the following database
Eye Disease Registry
• Diabetic Eye Registry
• Contact Lens Related Corneal Ulcer Surveillance
• Glaucoma Registry (in progress)
Treatment Outcome Registry
• Cataract Surgery Registry
Service Census
• Monthly Ophthalmology Service Census, MOH
NED is intended to reflect ophthalmology services within the
public sector. It therefore will seek participation from all
providers of ophthalmology services in the public sector
throughout the country. In the long term, it also hopes to
gather information from private eye care providers. |
|
Sponsor, Funding
and Governance: |
|
Sponsor: |
Department of Ophthalmology, Selayang
Hospital, Ministry of Health |
|
Funding: |
While the MOH is the sponsor of the
registry, the day to day operations of the National Eye Database
is largely funded by Ophthalmology Department, Selayang Hospital
The CRC of the MOH provided technical support in the form of
clinical epidemiology expertise, and biostatistical and ICT
services. |
|
Technical and Advisory Committee: |
A Steering Committee, establish the
objectives of NED and outline its functions. The committee
consists of ophthalmologists working at public sector oversee
the running of NED. An Advisory Committee sonsisting of MOH,
various professional bodies, and providers of ophthalmology
related services from all sectors govern and ensure the NED
stays focused on its objectives, and to assure its continuing
relevance and justification.
Dr. Goh Pik Pin is the principle investigator to this patient
registry |
|
Objectives: |
-
To
establish a website where information on visually threatening eye
diseases, which are of public health importance are gathered
prospectively through on line data entry. The information includes
disease frequency, distributions, risk factors, natural history and
the state of disease. These are useful information on health burden
arising of eye diseases.
-
To
determine treatment outcomes, and factors influencing outcomes of
cataract surgery. This serves the needs of outcome assessment.
-
To provide
information necessary to evaluate ophthalmology services through
census and key performance indicators. This serves the need of
accountability
-
To provide
a mean of prompt and wide dissemination of epidemiological and
clinical information through web application, such as notification
of contact lens related corneal ulcer. This is essential for public
health advocate.
-
To create
a tool for multi-centre research through website and thus stimulate
and facilitate research on eye diseases and its management in all
Ophthalmology Departments
The
NED consists of the following patient registers and service
census:
1. Cataract Surgery Registry
2. Diabetic Eye Registry
3. Contact lens Related Corneal Ulcer Surveillance
4. Glaucoma Registry
5. Monthly Ophthalmology Service Census, MOH
Dta collected will reflect ophthalmology service from public
sectors. It therefore seeks the participation from all providers
of ophthalmology services in the public sector throughout the
country. In future, it hopes to also gather information form
private eye care providers.
Participation rate has been consistently high for N ED |
|
Data collection
and transfer: |
National Eye Database is one of the first
patient registries which utilise on-line data collection using
e- CRF. It is hosted at
www.acrm.org.my/ned. The web application approach has
improved the efficiency in terms of data entry, data
verification through range check, thus make data collection
better. .Data entered are being analysed at the same time and
online report is ready for reviewed at anytime and any place .
Data security is ensured with various measures set up. |
|
Record linkage: |
There is also a plan to link the NED to the
National Operative Procedure register and the MOH’s Health
Management Information System (HMIS) to determine morbidity
events when these two databases are properly established. |
|
Reports & Publications: |
The NE D has real time report in the
website and also will be compiling annual statistical report .
Data from cataract surgery registry and diabetes eye registry
are being sub-analysed to investigate on risk factor and factor
affecting outcome. |
|
Resources: |
|
Registry operations: |
The day-to-day operations of the NE D are
undertaken by staff at Hospital Selayang |
|
Epidemiology: |
The Clinical Research Centre of the MOH
provided clinical epidemiology expertise for the registry. |
|
Biostatistics: |
This is outsourced to Biostat Consulting
Sdn Bhd. |
|
ICT support: |
These are outsourced to various IT
companies including NTT (data centre service), MIMOS and KSM
(hardware), Datamed Clinical Computing Sdn Bhd (databases and
applications), SecureTangent (information security), and variety
of specialty software providers (IBM/Ascential, SAS, STATA, WHO/MedDRA,
etc) |
|
Date updated: |
3/12/2007 |
