|
Name
(Abbreviation) |
Diabetes in Children and Adolescents
Registry
(DiCARE) |
|
Established since:
|
2006 |
|
Contact person: |
Ms. Geeta Appannah, Clinical Registry
Manager |
|
Address: |
Diabetes in Children and Adolescents
Registry (DiCARE)
1st Floor, MMA House
124, Jalan Pahang
50286 Kuala Lumpur
Malaysia |
|
Phone: |
03-40443070 |
|
Fax: |
03-40443060 |
|
Email: |
dicare@acrm.org.my |
|
URL: |
http://www.acrm.org.my/dicare |
|
Sponsor, Funding
and Governance: |
|
Sponsor: |
CRC, Ministry of Health (MOH), Paediatric
Departments of the MOH, National University of Malaysia Hospital
[Hospital Universiti Kebangsaan Malaysia (HUKM), University
Malaya Medical Centre |
|
Funding: |
MOH is the sponsor of the database. The CRC
of the MOH will provide technical support in the form of
clinical epidemiology expertise, and biostatistical and ICT
services. |
|
Advisory Committee: |
An Advisory Committee will be established
to govern the DiCARE. The MOH, various professional bodies, and
providers of diabetic adolescents related services) from all
sectors will be represented on this committee to ensure that the
DiCARE stays focused on its objectives, and to assure its
continuing relevance and justification. |
|
Objectives: |
The objectives of DiCARE are to:
-
Determine
the number and the time trend of Diabetes Mellitus in the young in
Malaysia.
-
Determine
the socio demographic profiles of these patients to better identify
the high risk group in our Malaysian population.
-
Determine
the number, evaluate and monitor the outcomes of intervention in
terms of metabolic control and complications.
-
Stimulate
and facilitate research using this database.
|
|
Scope
and Content: |
The DiCARE is intended to be a truly
national population-based disease registry. It therefore seeks
the participation from all providers of diabetology services in
all sectors (public, NGO and Private) throughout the country. |
|
Data
collection and transfer: |
The DiCARE will collect data using web
application, to enable individual SDPs to securely download data
they have submitted to DiCARE as well as to download
confidential communication where required.
Data will collected in the form of a monthly return to DiCARE of
all cases encountered in a month. The DiCARE registry office
will track data returns and prompt SDPs to submit data whenever
they fall behind schedule in reporting data. |
|
Record linkage: |
There is a plan to link DiCARE’s database
to the Jabatan Pendaftaran Negara’s database to ascertain
mortality outcome later.
There is also a plan to link the DiCARE 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 DiCARE plans to publish an annual
statistical report (the First Report will be due in 2008). |
|
Resources: |
|
|
Registry operations: |
The day-to-day operations of the DiCARE
will be undertaken by DiCARE staff (Staff to be determined at a
later date). |
|
Epidemiology: |
The Clinical Research Centre of the MOH
will provide 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: |
11/01/2008 |
