The National Renal Registry (NRR) collects information on patients on renal replacement therapy (RRT); i.e. dialysis and kidney transplantation. This information is needed for the estimation of treatment rates in the country, as well as to assist the Ministry of Health (MOH), Non-Governmental Organization, private providers and industry in the planning and evaluation of RRT services.
The National Renal Registry (NRR) has its origin in the Dialysis and Transplant Registry established by the Department of Nephrology in 1992. The sponsors of NRR are the Malaysian Society of Nephrology (MSN) and Association of Dialysis Medical Assistants and Nurses (ADMAN).
The objectives of 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.
Evaluate the RRT program.
Stimulate and facilitate research on RRT and ESRD.
Maintain the national renal transplant waiting list.
Benefits of participating in NRR
Apart from doing your bit for our community, here are some other benefits of participating in NRR:
All NRR registered patients who are eligible for cadaver renal transplant will be automatically listed in the eMOSS
Invitation to all functions organized by the NRR.
Acknowledgement in all publications of the NRR.
Personal copy of all NRR publications free of charge.
NRR: Malaysian Registry of Renal Biopsy Registry (MRRB)
Histological examination of native or transplant renal biopsy is the most important diagnostic tool in patients with parenchymal renal disease. The incidence of glomerulonephritis (GN) varies according to the population, demographic characteristics, environmental factors, socio-economic status and the prevalence of infectious diseases. In there is sparse information on the prevalence and incidence of glomerulonephritis, its potential disease burden and the temporal trend. To address this lack of information, the Malaysian Society of Nephrology (MSN) started the Malaysian Registry of Renal Biopsy (MRRB) in 2006 .
The objectives of the MRRB registry are as follows:
1. To determine the disease burden attributable to GN by quantifying its incidence and prevalence, and its geographic and temporal trends in Malaysia
2. To identify subgroups in the population at high risk of GN to whom preventive efforts should be targeted.
3. To identify potential causal and risk factors involved in GN.
4. To describe the clinical presentation and spectrum of GN
5. To stimulate and facilitate basic, clinical and epidemiological research on GN.
To define the safety and reliability Tenckhoff & CVC insertion procedures for patients in Malaysia.
Specific Objective : -
To determine the characteristic of patients using the Tenckhoff and CVC procedures
To determine the reliability of using Tenckhoff and CVC Insertion procedure for patients
To determine the comparison between procedure
To determine the complication between procedure
To determine infection rate and use of antibiotic with procedure
To determine the outcome and quality of life between patients
What the benefit of the project?
Having a comprehensive database of patient information will enable continuous monitoring and evaluation of care and management for post insertion.
Information on dialysis and long term parenteral nutritional requirement and outcome will improve the strategic planning of resources in the hospitals
The magnitude of the DM Nephropathy outcomes and complications can be identified with the data collected from the registry, which will enable evaluating and strategic planning for targeted preventive programs.
For a preventive program to be successful there should be a continuous monitoring of their effectiveness with their impact and this can be done with the availability of such databases.
There will be continuous monitoring of CVC insertion and care in the various hospitals in order to facilitate optimal management in the diagnosis and treatment of complications and to identify improvements in care that will optimize patient and fetal outcome.
The National Transplant Registry (NTR) collects information about patients who had undergone organ or tissue transplantation. The information allows us to estimate the magnitude of transplant activity in the country. Such information besides being useful to practitioner of transplantation is also useful in assisting the MOH, Non-Governmental Organizations, private providers and industry in the planning and evaluation of transplant services.
The NTR is co-sponsored by the following organizations of the Ministry of Health Malaysia: 1. National Transplant Coordinating Committee, MOH 2. Medical Development Division, MOH 3. Malaysian Society of Transplantation 4. Clinical Research Centre(CRC), HKL, MOH
The CRC has established a Transplant Registry Unit to provide the functional capacity for transplant registration. It maintains the NTR database.
The objectives of Transplant Registry are:
Determine the frequency and distribution of all types of transplantation activities in Malaysia.
Determine the outcomes of transplantation.
Determine the factors influencing outcomes of transplantation.
Evaluate transplantation services in the country.
Stimulate and facilitate research on transplantation and its management.
Apart from doing your bit for our community, here are some other benefits of participating in NTR:
Invitation to all functions organized by the NTR.
Acknowledgement in all publications of the NTR.
Personal copy of all NTR publications free of charge.
Free listing in the “Directory of Transplant Services in Malaysia”, an annual publication by NTR.
Free listing in the NTR’s web site.
Tap into a network of like-minded people from diverse professional disciplines and backgrounds.
Contact Lens Related Corneal Ulcer Surveillance : 237
Diabetic Eye Registry : 28,532
Retinoblastoma Registry : 35
New in the month (in the month):
Cataract Surgery Registry : 618
Tele-Diabetic Retinopathy Screening : 144
Glaucoma Registry : 21
Age Related macular Degeneration (AMD) : 2
Contact Lens Related Corneal Ulcer Surveillance : 0
Diabetic Eye Registry : 543
Retinoblastoma Registry : 0
National Eye Database (NED)
The National Eye Database (NED) is a service supported by the Ministry of Health (MOH) as an approach to collect health information. It collects data on incidences and distributions, and evaluates risk factors as well as treatment outcome of visually threatening eye diseases such as cataract, diabetic retinopathy, glaucoma and contact lens related corneal ulcer. In the initial phase, NED will collect data on cataract surgery, status of diabetic retinopathy in new diabetic patients, contact lens related corneal ulcer and glaucoma patients. Besides disease registry, NED also collects monthly service census of MOH Ophthalmology departments. The census serves as an effort to monitor key performance indicators of each ophthalmology department in the MOH.
Information collected at NED will be very useful in assisting the MOH, Non-Governmental Organizations, private healthcare providers and industry in program planning and evaluation, leading to eye disease prevention and control as well as continuous improvement of ophthalmic service in the nation.
National Eye Database (NED) is a 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.
The NED is governed by a technical committee consisting of public and private ophthalmologists. It seeks guidance on its scope and future directions from an advisory committee, constitutes of public and private health care planner and eye care providers.
NED has high level security in protecting its data. Data protection is being ensured at all times through strict compliance with regulatory requirements such as authentication of users and web application owners, access control, encryption, audit trail, control of external communication links and access, as well as system backup and disaster recovery.
Head of department and doctor in charge of each participating centre are given the rights to manage its own data, including data edit, data download and have access to the real time reports of their centres on the web. They are in turn responsible to ensure complete data ascertainment and up to date data entry. While site coordinator is responsible to supervise data collection and on-line data entry, either by him or her or by identified personnel. All users will be given a password, which need to be updated form time to time. Users are advised to refer to the User Instruction Manual which is posted on the web.
Objectives of the National Eye Databases
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 include disease frequency , distributions, risk factors, and natural history. These are useful information on health burden arising of eye diseases
To provide information necessary to evaluate ophthalmology services through census and key performance indicator gathered. This serves the need of accountability
To provide information necessary to evaluate ophthalmology services through census and key performance indicator gathered. 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 multicentre research through website and thus stimulate and facilitate research on eye diseases and its management in all Ophthalmology departments
At a National Paediatricians’ meeting in October 2001, it was decided that a registry should be set up to study the outcome of sick babies admitted to Neonatal Intensive Care Units (NICUs) in the country. It was recognised that a minimum data set and a data collection system at national level are important to monitor mortality and morbidity of infants admitted to NICUs
In collaboration with the Clinical Research Centre (CRC), Ministry of Health of Malaysia, a pilot study was conducted from 1st October to 31st December 2002 whence 14 centres participated. A report of this study had been published in October 2003. It was concluded that the NNR was feasible and useful for the purposes of clinical management, resource allocation and policy development. The NNR proper was then launched on 1st January 2004 and the first two MNNR reports for the years 2004 and 2005 have been published.
Malaysian NNR Aims
Determine the frequency and distribution of critically ill neonates in Malaysia. These are useful measures of the health burden arising from neonatal critical illness and its care in the country.
Study the mortality and some morbidities of babies admitted to NICU in participating hospitals.
Calculate the perinatal, neonatal, and stillbirth mortality rates of inborn babies.
Compare outcomes between various centres.
Develop indicators for standard of care in various areas e.g. ‘Acceptable septicaemic rates in NICUs’.
Study outcome of very low birth weight babies.
Stimulate and facilitate research on neonatal critical illness and its management.
The pattern of liver disease varies regionally and geographically. The Liver registry is a database of common diseases of the liver registry in Malaysia. Digestive disorder was responsible for 3.2 % of the total burden disease in Malaysia in the year 2000. The cirrhosis of the liver was the most important cause of burden of illness among digestive disorders contributing to 60% of the total burden in this category1.
This registry is a joint venture between the Ministry of Health Malaysia and the Malaysian Liver Foundation.
This database will be invaluable in the planning, operation, evaluation of health services and other policy management development for the Ministry of Health and other health care providers. Clinicians and other interested health care providers will also find this information useful for patient and public education.
Objectives of the project
To develop a comprehensive database of the database of the diseases of the liver and identification of its etiology.
To determine the incidence, prevalence rates, clinical features and the natural history of diseases of the liver in Malaysia.
To use it as a basis for calculating and evaluation of the outcome of specific therapy & management.
To assist in the planning, operation and estimation of need for service and for evaluation of program equity, accessibility and cost effectiveness (efficiency) and effectiveness.
To develop a complete picture of patient care through a comprehensive database wherein it would help to track patients’ visits with their management and outcome.
To enable in depth study of factors influencing change pattern of a disease and its effective forms of treatment.
To evaluate management of scoped patients’ subsequently to develop guidelines for improved care.
To facilitate research on Gastro-intestinal diseases.
Benefits of Project
Having a comprehensive database of patient information will enable continuous monitoring and evaluation of care management.
Information on no of patients’ scoped will improve the strategic planning of resources in the hospitals.
The magnitude of the disease can be identified with the data collected from the registry, which will enable evaluating and strategic planning for targeted preventive programmes. For a preventive programme to be successful there should be a continuous monitoring of their effectiveness with their impact and this can be done with the availability of an endoscope database.
There will be continuous monitoring of endoscope management in the various hospitals in order to facilitate early diagnosis and treatment of gastro-intestinal diseases and to identify improvements in care that will return these patients to an optimal state of functioning.
The National Trauma Database (NTrD) is a service initiated supported by the Ministry of Health (MOH) to collect information about trauma in Malaysia, which will enable us to know the incidence of trauma, and to evaluate its risk factors and treatment in the country. Such information is useful for assisting the MOH, Non-Governmental Organizations, private healthcare providers and industry in program planning and evaluation, leading to trauma prevention and control.
About NTrD
The NTrD is a MOH supported service to collect information on outcome of trauma patients. The information can be used to determine the frequency, mechanism of injury and distribution of major trauma in the country. Such information is useful for assisting the MOH, non-governmental organizations, private providers and industry in planning and evaluation, leading to trauma prevention and control.
The NTrD is sponsored by the Ministry of Health Malaysia and supported by several of its organizations: • Emergency Department, Selayang Hospital. • Department of Neurosurgery, Kuala Lumpur Hospital. • Clinical Research Centre (CRC), Kuala Lumpur Hospital.
The CRC of the MOH will provide technical support in the form of clinical epidemiology expertise, and biostatistical and ICT services.
The objectives of the NTrD are to:
• Determine the frequency, mechanism of injury and distribution of major trauma in Malaysia. These are useful measures of health burden arising from the major trauma and its management in the country. • Determine the outcome and probability of survival of the trauma patients. • Evaluate the major trauma management in the participating hospitals and to come up with guidelines for improved trauma care. • Determine the extent improvements introduced have been achieved. • Stimulate and facilitate research on major trauma and its management. Sources of trauma data in Malaysia
The NTrD receives data on trauma from main source of: • All Emergency Physicians and Neurosurgeons in Malaysia beginning with those currently working in the government sector and later on extending it to those beyond (private and armed forces) for data on trauma in the country.
What are the benefits of participating in NTrD?
Apart from doing your bit for your community, here are some other benefits to being a reporter: • Access to the database and to therefore study the trend of trauma in the country. • Online data query and statistics of your institution anytime, anywhere. • Online comparison of your institution data versus the country data anytime, anywhere. • Data security and privacy are in compliance with regulatory requirement. • Invitation to all functions organized by the NTrD. • Acknowledgement in all publications of the NTrD. • Complementary personal copy of all NTrD publications. • Free listing in the NTrD’s web site. • Tap into a network of like-minded people from diverse professional disciplines and backgrounds.
Diabetes Registry of Malaysia (DRM) :
The Diabetes in Children and Adolescents Registry (DiCARE)
Sponsors :
MOH Pediatric & Adults Medicine, CRC , HUKM & UMMC
The Diabetes in Children and Adolescents Registry (DiCARE) is a MOH supported service to collect information about diabetes mellitus. The information can be used to estimate the incidence of diabetes disease according to the types, to evaluate its risk factors and treatment in the country. Such information is useful for assisting the MOH, non-governmental organizations, private providers and industry in planning and evaluation, leading to diabetes disease prevention and control.
Diabetes in Children and Adolescents Registry
The Diabetes in Children and Adolescents Registry (DiCARE) is a MOH supported service to collect information about diabetes mellitus. The information can be used to estimate the incidence of diabetes disease according to the types, to evaluate its risk factors and treatment in the country. Such information is useful for assisting the MOH, non-governmental organizations, private providers and industry in planning and evaluation, leading to diabetes disease prevention and control.
The DiCARE is sponsored by the Ministry of Health and supported by several of its organizations: • Paediatric and Adult Medical Departments, MOH. • Clinical Research Centre, Kuala Lumpur Hospital. • Hospital Universiti Kebangsaan Malaysia. • Universiti Malaya Medical Centre.
Purpose of the DiCARE The objectives of the DiCARE are to: • Determine the number and the time trend of diabetes mellitus in the children and adolescents 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 registry.
Here are the benefits gained if you were to report cases to DiCARE? Apart from doing your bit for your community, here are some other benefits to being a reporter: • Access to the database and to therefore study the trend of diabetes disease among children and adolescents. • Online data query and statistics of your institution anytime, anywhere. • Online comparison of your institution data versus the country data anytime, anywhere. • Data security and privacy are in compliance with regulatory requirement. • Invitation to all functions organized by the DiCARE. • Acknowledgement in all publications of the DiCARE. • Complementary personal copy of all DiCARE publications. • Free listing in the DiCARE’s web site. • Tap into a network of like-minded people from diverse professional disciplines and backgrounds.
The National mental health registry (NMHR) collects information about patients with mental disorder in Malaysia. The information allows us to estimate the incidence of selected mental disorders, and evaluate its risk factors and treatment in the country. Such information is useful for assisting the MOH, Non-governmental Organizations, private providers and industry in the planning and evaluation of mental health services, leading to its prevention and control.
The NMHR is co-sponsored by the following organizations of the Ministry of Health Malaysia:
Public Development Division, Ministry of Health
Public Health Department
Psychiatry Services (Department of Psychiatry & mental Health)
The objectives of The National mental Health Registry is to :
Determine the disease burden attributable to mental disorders by quantifying its morbidity, and its geographic and temporal trends in Malaysia.
Identify subgroups in the population at high risk of mental disorders to whom prevention effort should be targeted.
Identify potential risk factors involved in mental disorders.
Evaluate the treatment, control and prevention of mental disorders.
Stimulate and facilitate epidemiological research on mental disorder, e.g generating hypotheses on etiology.
Until recently, Malaysia did not have official suicide rates. The National Statistics Department quoted figure as long as 1 per 100,000 suicides per year (Department of Statistics Malaysia, 2003); while cross sectional research in different parts of the country suggested higher figures (Maniam 1988; Hayati, Salina et al. 2004). Among difficulties that were suggested to cause these discrepancies are : the degree of subjectivity in identifying a death suicide; lack of structured data describing the “manner of death” for cases of traumatic or non-natural cases; and inconsistencies in the way terms are defined and data are collected and coded.
In response to this, the National Suicide Registry Malaysia (NSRM) was officiated in 2007 to compile the census of suicidal deaths that occur in Malaysia via its networks of forensic services. It is sponsored by the
The Psychiatry and Mental Health (MOH); while the Clinical Research Centre (CRC) provided the technical expertise. In 2008, the Institute of Health Behavior Research came on board to spread head a platform for further research in this area. The NSRM is managed by a Joint Technical Committee comprising of these four agencies. Meanwhile, an Advisory Committee provides governance to ensure that the NSRM stay focused on its objectives and to assure its continuing relevance and justification.
Objective :
The National Suicide Registry Malaysia (NSRM) aims to create a nationwide system to capture data on completed suicide in Malaysia i.e. the rates, methods, geographic and temporal trends and the population at high risk of suicide. Data from this project will provide detailed statistics on suicide in Malaysia. This is important for health prioritizing and identifying areas which health providers should focus.
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National Cardiovascular Disease Database (NCVD)
Acute Coronary Syndrome (ACS)
Percutaneous Coronary Intervention (PCI)
Sponsor :
MOH Cardiology & National Heart Association of Malaysia
The National Cardiovascular Disease Database (NCVD) is a service supported by the Ministry of Health (MOH) to collect information about cardiovascular disease in Malaysia, which will enable us to know the incidence of cardiovascular disease, and to evaluate its risk factors and treatment in the country. This information is useful in assisting the MOH, Non-Governmental Organizations, private healthcare providers and industry in program planning and evaluation, leading to cardiovascular disease prevention and control.
National Cardiovascular Disease Database Cardiovascular disease database refers to the ongoing systematic collection, analysis and interpretation of cardiovascular disease data essential to the planning, implementation and evaluation of clinical and public health services, closely integrated with dissemination of these data to those who need to know. The final link in the chain is the application of these data to the treatment, prevention and control of cardiovascular disease. A database system includes a functional capacity for data collection, analysis and dissemination linked to clinical and public health programs.
Malaysia has several cardiovascular disease databases in tertiary MOH hospitals and private providers in Kuala Lumpur, Sarawak, Penang, Johore and National Heart Institute (Institut Jantung Negara). The National Cardiovascular Disease Database (NCVD) is established to integrate various databases and other data source to achieve nation-wide cardiovascular database.
The NCVD is sponsored by the Ministry of Health Malaysia and supported by the following organizations as:
- NATIONAL CANCER PATIENT REGISTRY- SURGICAL ONCOLOGY
SDP recruitment
Cumulative (since started): 0
New in the month (in the month): 0
Total Data Submission
Cumulative (since started): 0
New in the month (in the month): 0
This database can serve as an audit to assist clinicians and healthcare providers in reviewing the treatment offered and any changes that need to be done can be carried out without delay. It can also be used as a tool for clinicians to further improve their skills, add interest in areas for further research.
The database can contribute to the overall improvement on the care that can be provided in Malaysian hospitals.
The objectives of the registry are as follow : -
Describe the natural history of Cancer.
The registry shall describe the characteristics of patients with Cancers, its management, and patient survival and quality of life outcomes with and/or without treatment; and shall describe variation thereof across different groups, healthcare sectors or geographic regions; and its secular trend over time.
2. Determine effectiveness of treatments for cancer.
The registry shall determine clinical effectiveness and cost effectiveness of treatments of Cancer in real-world practices in Malaysia.
Monitor safety and harm of products and services used in the treatment of Cancers.
The registry shall serve as and active surveillance system for the occurrence of unexpected or harmful events for products and services.
4. Evaluating access to and quality services for cancers.
The registry shall assess difference between providers or patient populations based on performance measures that compare treatments provided or outcomes achieved with “gold standard” (e.g, evidence-based rates) or comparative benchmarks for specific health outcomes (e.g., risk-adjusted survival rates). Such programs may be used to identify disparities in access to care, demonstrate opportunities for improvement, establish differentials for payment by third parties, or provide transparency through public reporting.
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National Cancer Patient Registry-Hematology Maligancy (NCPR-HM)
To evaluate the treatment outcome of patients diagnosed with haematological malignancies & aplastic anaemia, whom are seen and treated at the participating haematology centres.
Specific objectives
to determine the socio-demographics features of patients who are diagnosed with haematological malignancy (Acute and chronic leukaemia, Myelodysplasia and the Lymphomas, and multiple myeloma) and a plastic anemia.
To describe the 3 year crude and relative survival and predictors of poor survival
To describe the disease free survival amongst these patients
To compare outcome between different modalities of treatment
To assess cost-effectiveness of different treatment
To assess quality of life amongst patient with haematological malignancy
Benefits
Patient with haematological malignancy require treatments, which are costly and resource consuming. Information on long term outcome after treatment from local patients is important in planning the future direction of treatment plan in such a group of patients in the future.
Study of treatment outcome for haematological malignancies has not been carried out in Malaysia. The purpose of this study is to measure the treatment outcome in patients with haematological malignancy. A system of long term follow-up and surveillance is needed and be instituted in centres treating haematological malignancy. Information on treatment and long term outcome shall be collected to generate meaningful data for future planning and reference.
This database can serve as an audit to assist clinicians and healthcare providers in reviewing the treatment offered and any changes that need to be done can be carried out without delay. It can also be used as a tool for clinicians to further improve their skills, add interest in areas for further research.
The database can contribute to the overall improvement on the care that can be provided in Malaysian hospitals.
For policy makers, this database can help with regards to decision making on the resource allocation, need on improvement of quality control on equipments, training personnel and
strengthening areas which require improvement and provide optimal care to patients.
Recent studies have shown an increasing incidence of colorectal cancer in Asian populations. According to the Second Report of the National Cancer Registry1, colorectal cancers accounted for 14.2% of male cancers and 10.1% of female cancers in Malaysia, making it the commonest cancer among men and the third most common cancer among women respectively. Colorectal cancer is the third commonest cause of cancer-related mortality in Malaysia.
1. Gerard Lim CC, Yahya H. Second Report of the National Cancer Registry, Cancer Incidence in Malaysia. National Cancer Registry, Ministry of Health, Kuala Lumpur, 2003.
Rationale/Justification
At present, the National Cancer Registry only collects data on the prevalence and incidence of colorectal cancer by age, sex and ethnicity.
The National Cancer Patient Registry-Colorectal Cancer (NCPR-CC) is established as the first colorectal cancer registry in Malaysia to systematically collect data on all aspects of colorectal cancer relevant to its prevention, management and treatment evaluation in Malaysia. This information is useful in assisting the Ministry of Health (MOH), Non-Governmental Organizations, private healthcare providers and industry in program planning and evaluation, leading to improved colorectal cancer prevention, management and control.
Objectives
The objectives of the National Cancer Patient Registry- Colorectal Cancer are to:
Determine the prevalence of colorectal cancer in Malaysia.
Determine the socio-demographic profiles of these patients.
Determine the risk factors in the patients with colorectal cancer.
Determine the histological types and stages of presentation of colorectal cancer.
Evaluate and monitor the outcomes of surgery and oncology therapy based on selected performance indicators such as
disease-free survival rates
mortality
complications of treatment
side-effects of treatment
patient’s quality of life
Determine the cost burden to the nation by colorectal cancer and the cost-effectiveness of treatment and prevention programs.
As part of a larger research program comprising of multiple projects studying various aspects of nasopharyngeal carcinoma by a network of researchers from various institutes in the country (the Malaysian NPC Study Group), we are planning a multi-centre prospective study on clinical treatment outcome of patients with nasopharyngeal carcinoma. The project will be coordinated by the Network of Clinical Research Centres of the Ministry of Health. The plan is to enter clinical information of all new confirmed cases of nasopharyngeal carcinoma through a web-based application to a secure server which will form the clinical database. Information about clinical investigations, treatment and outcome will also be entered. While we are planning for a period study of 3 years, we hope that this will continue after that.
In addition to that, in some centres, we will also be collecting samples of tissue (and possibly blood) of all suspected cases of nasopharyngeal carcinoma. The information of all these suspected cases will be entered into the database but only the confirmed cases will be entered into the prospective clinical outcome study. The tissue and blood will be collected as part of the Malaysian NPC tissue bank. Researchers who use the tissue from the bank will be required to enter the results of tests performed on the samples. Confidentiality and ownership issues will be worked out. The usefulness of registers is dependent on the quality of their design and of the data that they contain.
To collect information useful for incidence analysis
To collect information useful for prevalence analysis
To collect information useful for mortality analysis
To ascertain patient’s morbidity data and remission rate
To facilitate aetiological studies
Primary Objectives
To establish a national NPC clinical database
To establish a national NPC tissue bank
Secondary Objectives
To describe the crude and relative survival of NPC patients
To determine the predictors of poor survival To determine the post treatment morbidity rates in terms of recurrence (both local and distant failures)
To determine the side effects (toxicity) experienced by NPC patients undergoing radiotherapy and/ or chemotherapy
To identify predictors of post treatment complications (morbidity)
To enable the identification, validation and characterization of new biomarkers, including markers for disease detection, classification, prognosis and therapy. To provide health care evaluation & appraisals
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National Surgical Registry (NSR)
(Known before as Peri-Operative Mortarlity Review & Computerized Operation Theatre Documentation System)
To systematically assess and identify the shortfalls in the delivery of care of surgically related disciplines and to take suitable remedial measures.
Specific Objectives
To look into specific surgical and anesthetic care
Pre-operative diagnosis, assessment and resuscitation
Intra-operative care, technical skills and appropriateness of procedure
Post-operative care
To look at logistics and infrastructure support such as blood banking, radio-imaging and transport, in relation to operating theatre services.
To identify shortfalls in the delivery of surgical & anesthetic services
To recommend remedial measures to the MOH
What are the benefits of the project?
A database
Patient care and education
Risk assessment and person contact is easier using a customized computer database
ii Education of healthcare professional
Fostering collaboration with other peri-operative mortality registries throughout the world
Audit and review surgery outcomes in terms of complication
iii Research
Provide a more accurate and refined prevalence estimates of peri-operative mortality in
Malaysia e.g. ethnic variations and risk and geographical variations
Facilitate important research on peri-operative mortality from data collected in the registry
Generate data for publication of original scientific papers
iv Health Policy Makers
Help decision making on the resource allocation, need to improvement of quality control on equipments, training personnel and strengthening areas which require improvement and provide optimal care to patients.
Provide evidence to help formulate screening and surveillance strategies that are relevant and cost-effective in the Malaysia setting.
NAICU was established in 2003 as a quality initiative under Unit Kualiti with 14 ICUs from the state hospitals. To date, a total of 1 ICU participate in the audit including 1 private hospital. Since early this year, NAICU became part of the CRC Registry
What are the objectives of this project?
To establish a national database of patient admitted to the adult intensive care units in Malaysia (both government and private hospitals). Database includes ICU referrals, patient characteristics, types of monitoring and interventions, complications and mortality outcome.
To conduct regular surveys on ICU facilities and manpower and the availability of intensive care service to meet its demand in Malaysia.
To compare the performance of intensive care units based on standardized mortality rate (SMR) using Simplified Acute Physiology Scoring System (SAPSII) and benchmark them with international standards.
To review the trends and changing patterns of practice of intensive care ang their correlation with patient outcome
To identify areas of concern in patient care and introduce remedial measures guided by evidence based medicine. Compliance of such measures and their effectiveness will be measured.
What are the benefits of the project?
NAICU database providers information on the current status and the availability and demands for intensive care services, this information was used in formulating RM9 projects to upgrade ICUs throughout MOH hospitals to meet the increasing demands, through the effort, more than 100 ICU beds have been added in MOH hospitals in the last three years.
One of the remedial measures recommended by NAICU to overcome the shortage of ICU beds is the establish of ICU networking in 2006. The web based “ICU Bed Watcher” track real time information on the availability of beds in the ICUs within a geographical zone. ICU networking enables transfers of patients between hospitals and ensures better utilization of ICU beds and that deserving patient receive intensive care in a timely manner. To date, four networks have been establish i.e. Central (Klang Valley), Northern, Perak and Southern networks.
Following observation that the incidence of ventilator associated pneumonia (VAP) is high in local ICUs, Ventilator Care Bundle (VCB) was introduced in MOH hospitals in 2007. Care bundles are groups of evidence-based practice and compliance of such practices have been shown to improve patient outcomes. Since the introduction of VCB, the VAP rates of MOH ICUs have steadily decline.
A set of ten ICU management protocols were developed in 2006 and distributed to all ICU in Malaysia. The protocols contain best current practices and they are freely downloadable from the NAICU website www.icu.org.my
NAICU website enables participating units to generate predetermined reports and maintain accurate local census.
NAICU provides a network of ICUs which are capable of participating in multi-centre clinical trials both locally and internationality.
A database of RA patients in Malaysia would be a significant step in providing best care to these patients. It would allow us to find out scope of the problem, any local factors involved and hopefully come up with viable solution. By knowing the socioeconomic impact of this chronic but treatable illness on patients and the community, its serve as a guide for the health authority in regards to health budgeting and allocation. The database would also make possible future clinical observational studies both locally and in collaboration with international groups.
Objectives of the project :
1. To determine the incidence and prevalence of RA in Malaysia
2. To determine the demographic data e.g. sex ratio, ethnic group distribution and age of onset.
3. To determine the disease expression in terms of clinical manifestations, both articular and extra articular manifestations.
4. To study the management of these patients e.g. to determine the type of disease modifying drugs (DMARDs) are used and when they are used during the course of the disease, to determine how many patients are on biologics and to know the proportion of patients who are not treated with DMARDs but on symptomatic.
5. To determine the outcome of RA patients in the general population, the followings will be studied:
Disease activity level in relation to year of treatment
Rate of remission of RA in Malaysia
Extent of disability caused by RA e.g. number of deformed/damaged joint, functional assessment by HAQ score.
Economic impact of RA on the individual patients, family and health care system
Describe the natural history of Diabetic Foot/Hand. The registry shall describe the characteristics of patients wuth Diabetic foot and hands, it’s management, and patient survival and quality of life outcomes with and/or without treatment; and shall describe variation thereof across different groups, healthcare sectors or geographic regions, and its secular trend over time in Malaysia
Determine effectiveness of treatments for Diabetic Foot/Hand. The registry shall determine clinical effectiveness and cost effectiveness of treatments of Diabetic Foot and Hand in real world clinical practices in Malaysia
Monitor safety and harm of products and services used in the treatment of Diabetic Foot/Hand. The registry shall serve as an active surveillance system for the occurance of unexpected or harmful events for products and services.
Evaluating access to and quality of treatment services for Diabetic Foot/Hand. The registry shall assess differences between providers or patient populations based on performance measures that compare treatment provided or outcomes achieved witah “gold standards” (e.g: evidence-based guidelines) or comparative benchmarks for specific health outcomes (e.g: risk-adjusted survival rates). Such programs may be used to identify disparaties in access to care, demonstrate opportunities for improvement, establish disparities in access to care, demonstrate opportunities for improvement, establish differentials for payment by third parties, or provide transparency through public reporting.
Benefits
Baseline data on diabetes foot/hand diseases among Malaysians
To strengthen diabetes prevention and control program in hospitals
To make recommendations to reduce the occurrences of diabetes cases
To increase awareness of diabetes disease among Malaysians
2. National Orthopedic Registry Of Malaysia (NORM): Hip Fracture
Describe the natural history of hip fracture. The registry shall describe the characteristics of patients with hip fracture, it’s management, and patient survival and quality of life outcomes with and/or without treatment; shall describe variation thereof across different groups, healthcare sectors or geographic regions, and its secular trend over time in Malaysia
Determine effectiveness of treatment for hip fracture. The registry shall determine clinical effectiveness and cost effectiveness of treatment of hip fracture in real-world clinical practices in Malaysia. Multiple studies have demonstrated disparities between the results of clinical trials and results in actual clinical practice. Furthermore, efficacy in a clinical trial for a well-defined population may not be generalized to the Malaysian population. The registry is also particularly useful for tracking effectiveness, the registry will also be designed to collect resource use and cost data for the same patients to be used in modeling cost effectiveness. Cost effectiveness refers to a means to describe the comparative value of a health care product or service in terms of its ability to achieve a desired outcome for a given unit of resources.
Monitor safety and harm of products and services used in the treatment of hip fracture. The registry shall serve as an active surveillance system for the occurance of unexpected or harmful events for products and services. Patient registries offer several advantages for active surveillance. First, the current practice of spontaneous reporting of adverse events relies on a non-systematics recognition of an adverse event by a clinician and the active effort by the clinician to make a report to manufacturers and health authorities. Second, these events are generally reported withoutna denominator (i.e: the exposed population), and therefore an incidence level is difficult to determine because patient registries can provide systematics data on adverse events and the incidence of these events, they are being used with increasing frequency in the areas of helath care products and sevices.
Evaluating access to and quality of treatment services for hip fracture. The registry shall assess differences between providers or patient populations based on performance measures that compare treatment provided or outcomes achieved with “gold standards” (e.g: evidence-based guidelines) or comparative benchmarks for specific health outcomes (e.g: risk-adjusted survival rates). Such programs may be used to identify disparities in access to care, demonstrate opportunities for improvement, establish differentials for payment by third parties, or provide transparency through public reporting.
Benefits
Baseline data on diabetes foot/hand diseases among Malaysians
To strengthen diabetes prevention and control program in hospitals
To make recommendations to reduce the occurrences of diabetes cases
To increase awareness of diabetes disease among Malaysians
To determine the number of referrals, the time trend of waiting for surgery and the risk as well as surgical outcomes in Malaysia for coronary heart disease, valvular heart disease and aortic aneurysm
To determine the socio demographic profiles of these patients to better identify the high-risk group in our Malaysian population
To determine the number, evaluate and monitor the outcomes of each disease and surgical intervention based on selected performance indicators.
To determine the efficiency of, and adherence to current guidelines treatment guidelines
To determine the cost to the nation by cardiothoracic disease and the cost effectiveness of treatment and prevention programs,
To stimulate and facilitate research cardiothoracic disease research using this database
What are the benefits of the project?
The clinical database
patient care and education
risk assessment and person contact is easier using a customized computer database
Education of healthcare professionals
Fostering collaboration with other cardiothoracic surgery registries through out the
world. Audit and review cardiothoracic surgery outcomes in terms of complications
Research
Provide a more accurate and refined prevalence estimates of cardiothoracic disease in Malaysia e.g., ethic variations and risk and geographical variations
Facilitate clinically important research on cardiothoracic disease from data collected in the registry
Generate data for publication or original scientific papers
iv. Health Policy Makers
Help decision making on the resource, need on improvement of quality control on equipments, training personnel and strengthening areas which require improvement and provide optimal care to patients
Provide evidence to help formulate screening and surveillance strategies that are revelant and cost effective in Malaysian setting
To determine the socio-economic profile of patients with acute strokes in Malaysia
To determine the current practice hence improve the quality of acute strokes by continually promoting compliance of stroke CPG
To determine risk factors for further planning of prevention and control program
To provide foundation for further acute stroke and epilepsy research.
What are the benefits of the project?
This database can serve as an audit to assist clinicians and healthcare providers in reviewing the treatment offered and any changes that need to be done can be carried out without delay
It can be used as a tool for clinicians to further improve their skills, add interest in areas for further research
The database can contribute to the overall improvement on the care that can be provided in Malaysian hospitals.
For policy makers, this database can help with regards to decision making on the resource allocation, need on improvement of quality control on equipments, training personnel and strengthening areas which require improvement and provide optimal care to patients.
To determine the demographic characteristics among asthmatic and COPD patients in Peninsular Malaysia
To determine the risk group and cause of asthmatic and COPD patinet in Peninsular Malaysia
To determine the difference between the asthmatic and COPD the patients.
To evaluate the service provided and disease burden.
To evaluate the quality of life and outcome.
What are the benefits of the project?
Having a comprehensive database of patient information will enable continues monitoring and evaluation of care management
The magnitude of the disease can be identified the data collected from the registry, which will enable evaluating and strategic planning for targeted preventive programmes.
For a preventive programme to be successful there should be a continuous monitoring of their effectiveness with their impact and this can be done with the availability of a chest database.
The registry shall describe the characteristics of patients with Hemophilia Disease; its management and patient survival and quality of life outcomes with and/or without treatment; and shall describe variation thereof across different groups, healthcare sectors or geographic regions, and its secular trend over time in Malaysia
Determine effectiveness of treatment for Hemophilia
The registry shall determine clinical effectiveness and cost effectiveness of treatments of Hemophilia Disease in real-world clinical practices in Malaysia
Monitor safety and harm of products and services used in the treatment of Hemophilia Disease. The registry shall serve as an active surveillance system for the occurrence of unexpected or harmful events for products and services.
Evaluating access to and quality of treatment services for Hemophilia Disease. The registry shall assess differences between providers or patient populations based on performance measures that compare treatments provided or outcomes achieved with “gold standards” (e.g.’ evidence-based guidelines) or comparative benchmarks for specific health outcomes (e.g., risk-adjusted survival rates). Such programs may be used to identity disparities in access to care, demonstrate opportunities for improvement, establish differentials for payment by third parties, or provide transparency through public reporting.
To develop a complete picture of patient care through a comprehensive database wherein it would help to track patients’ visits with their management and outcome
To enable in depth study of factors influencing change pattern of disease and its effective forms of treatment
To evaluate management of patients disease condition and subsequently to develop guidelines for improved care
To facilitate research on Urological Disease
What are the benefits of the project?
Having a comprehensive database of patient information will enable continuous monitoring and evaluation of care management
Information on no of patients’ treated will improve the strategic planning of resources in the hospitals
The magnitude of the disease can be identified with the data collected from the registry, which will enable evaluating and strategic planning for targeted preventive programmes. For a preventive programme to be successful there should be a continuous monitoring of their effectiveness with their impact and this can be done with the availability of an urology database.
There will be continuous monitoring of urology management in the MOH hospitals in order to facilitate early diagnosis and treatment of urology diseases and to identify improvements in care that will return these patients to an optimal state of functioning.
The registry shall describe disease burden of hearing impairment in Malaysia
the registry shall describe the characteristic of hearing loss, its aetiology, surgical and medical management, rehabilitation measures and outcomes including cochlear implantation in Malaysia
To describe variation of hearing loss across different age-groups, ethnicity, gender, socioeconomic status and geographical region in Malaysia
To determine the age of referral for hearing loss, the duration between suspicion of hearing loss and time of diagnosis, duration between detection of hearing loss and rehabilitation
To determine possible causes for late referral hearing loss
To determine the implication of hearing loss towards health financial/economic burden.
What are the benefits of the project?
Baseline data on hearing loss and the related diseases in Malaysia
To strengthen hearing loss detection and rehabilitation
To make recommendations to improve hearing detection program , such as hospitals & schools
To consider a systematic approach to financial support for patient requiring rehabilitative measures for hearing loss
Determine the outcome of nuclear medicine treatment
Evaluate the Nuclear medicine treatment in the participating hospitals
Monitor safety and harm of products and services used in Nuclear Medicine. The registry shall serve as an active surveillance system for the occurrence of unexpected or harmful events for products and services.
Evaluating access to and quality treatment services of Nuclear Medicine
The registry shall assess differences between providers or patient populations based on performance measures that compare treatments provided or outcomes achieved with “gold standard” (e.g., evidence-based guidelines) or comparative benchmarks for specific health outcomes (e.g., risk-adjusted survival rates). Such programs may be used to identify disparities in access differentials for payment by third parties, or provide transparency through public reporting.
What are the benefits of the project?
Stimulate and facilitate proper Nuclear Medicine treatment
As a tool for clinicians to further improve their skills and add interest in area for further research
The database can be contribute to overall improvement of care that can be provided in Malaysian hospitals
For policy makers, this database can help with regards to decision making on the resource allocation, need to improvement of quality control on equipments, training personnel and strengthening areas which require improvement and provide optimal to patients.
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National Radiology Registry : Interventional Radiology
To develop a complete picture of patient care through a comprehensive database wherein it would help to track patients’ management and outcome
To enable in depth study of factors influencing patients outcomes and its effective forms of treatment
To evaluate management of patients’ obstetric outcome and subsequently to develop guidelines for improved care.
To facilitate research on improving maternal and foetal morbidity & mortality
To facilitate research on specific maternal complication (ante partum, intra partum & post partum)
What are the benefits of the project?
Having a comprehensive database of patient information will enable continuous monitoring and evaluation of care management.
Information on delivery rate and obstetric outcomes will be improve the strategic planning of resources in the hospitals
The magnitude of the obstetric outcomes and complications can be identified with the data collected from the registry, which will enable evaluating and strategic planning for targeted preventive programmes. For a preventive programme to be successful there should be a continuous monitoring of their impact and this can be done with availability of an obstetric database.
There will be continuous monitoring of obstetrics care in the various hospitals in order to facilitate optimal management in he diagnosis and treatment of complications and to identify improvements
in care that will optimize patient and fetal outcome.
