|
National Renal Registry (NRR) |
|
Name
(Abbreviation) |
National Renal Registry
(NRR) |
|
Established since:
|
1993 |
|
Contact person: |
Lee Day Guat, NRR Manager |
|
Address: |
2nd Floor, MMA House
124, Jalan Pahang
53000 Kuala Lumpur
Malaysia |
|
Phone: |
(603) 4045 8636 |
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Fax: |
(603) 4042 7694 |
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Email: |
nrr@msn.org.my |
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URL: |
http://www.msn.org.my/nrr |
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Sponsor, Funding
and Governance: |
Sponsor:
Malaysian Society of Nephrology (MSN)
Funding:
The MSN provided grants to fund the NRR operational activities.
The CRC of the MOH provided technical support in the form of
clinical epidemiology expertise, and biostatistical and ICT
services.
The NRR receives some funding from the medical device and
pharmaceutical industries from time to time, and it also raises
fund through its publication.
Advisory Committee or Governance Board:
An Advisory Committee is established to govern the NRR. The MSN,
ADMAN, NKF, dialysis providers from the MOH, University and
private sectors are represented on this committee to ensure that
the NRR stay focus on its objectives, and to assure its continuing
relevance and justification.
Dato’ Dr. Zaki Morad b Mohd Zaher is the current chairperson of
the Advisory Committee |
|
Objectives: |
The objectives of the NRR are: to
-
Determine
the disease burden attributable to End Stage Renal Disease (ESRD),
and its geographic and temporal trends in Malaysia.
-
Determine
the outcomes, and factors influencing outcomes of Renal Replacement
Therapy (RRT).
-
Evaluate
the RRT program in Malaysia.
-
Stimulate
and facilitate research on RRT and ESRD.
-
Maintain
the national renal transplant waiting list.
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Scope
and Content: |
The NRR is intended to be a truly national
population-based registry. It therefore seeks the participation of
all dialysis providers from all sectors (public, NGO and Private)
throughout the country. Participation rate has been consistently
high; 87.4% (HD) and 88.4% (PD) in 2004.
Apart from basic demographic and baseline clinical data, NRR also
collects data on dialysis treatment parameters, medication,
clinical measurements (BP, weight, etc), laboratory investigations
and Quality of Life measure (Spitzer’s QL index) annually. |
|
Data
collection and transfer: |
The NRR data collection presently is still
paper-based. These are:
-
Dialysis Patient Notification, when a patient
commences dialysis
-
Annual Returns on clinical, treatment and lab
data
-
An annual assessment of Work related
Rehabilitation and Quality of Life
-
An Outcome Notification reporting patient
with outcome event, such as death, change in treatment modality (HD,
PD or Transplantation), move or lost to follow-up.
NRR will be introducing electronic data
capture (EDC) via the internet in the near future. |
|
Record linkage: |
NRR’s database is currently linked to the:
There is plan to link the NRR 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 NRR has been publishing an annual
statistical report since 1993. Numerous local and international
researches from the NRR data has been published in various
nephrology journals over the years.
In recent years, the NRR is looking into variation in certain
treatment and outcome measures among dialysis providers. An
individual centre’s result is compared against the national
average or some other reference values to identify potential
opportunity for quality improvement. Such centre specific report
however is strictly for the consumption of the individual centre
on request by the center doctor in-charge.
Visit NRR’s website to download the NRR publications. Download
your own center’s patient data and report is restricted to the
doctor in-charge of the centre. |
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Resources: |
|
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Registry operations: |
The day-to-day operations of the NRR are
undertaken by NRR’s staff, comprises a full-time registry manager
and 2 full-time assistants. |
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Epidemiology: |
The Clinical Research Centre of the MOH
provided clinical epidemiology expertise for the registry |
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Biostatistics: |
This is outsourced to Biostat Consulting
Sdn. Bhd. |
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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: |
1/12/2005 |
