Clinical databases and Disease registers in Malaysia affiliated with ACRM

The ACRM is seeking clinical databases and disease registers in Malaysia to become affiliated with ACRM. There are great benefits to joining the ACRM family:

  • Invitation to all events organized by ACRM.
  • Hosting of database or registry's website free of charge.
  • Access to epidemiologic, statistical and IT expertise.
  • Tap into a network of like minded professionals with shared interest in clinical databases and disease registers.

The following registers are currently affiliated with ACRM:

  • National Renal Registry - Malaysian Dialysis and Transplant Registry
  • National Renal Registry - Malaysian Registry of Renal Biopsy
  • National Transplant Registry
  • National Eye Database
  • National Mental Health Registry (NMHR)
  • Malaysian Liver Registry
  • Malaysian National Neonatal Registry
  • National Trauma Database
  • National Cardiovascular Disease Database (NCVD)
  • Malaysian Dermatology Registry
  • National Suicide Registry (NSRM)
  • National Cancer Patient Registry- Oncology
  • National Cancer Patient Registry – Breast CA
  • National Cancer Patient Registry-Hematology Maligancy (NCPR-HM)
  • NCPR –Colorectal Cancer
  • National Cancer Patient Registry – Nasopharyngeal Cancer
  • National Orthopaedic Registry (NORM) Diabetic Hand and Foot Disorder
  • National Orthopaedic Registry (NORM) Hip Fracture
  • National Inflammatory Arthritis Registry
  • National Urology Registry
  • National Neurology Registry
  • National Obstetric & Gynaecology (NOR) & Maternal Mortality Register (MMR)
  • National Nuclear Medicine Database
  • Malaysian Registry of Intensive Care
  • National Hearing and Otology related Disease / Cochlear Implant
  • National Radiology Registry
  • National Surgical Registry
    (Known before as Peri-Operative Mortarlity Review & Computerized Operation Theatre Documentation System)
  • Malaysia Cardiothoracic Registry (MyCare)
  • National Chest Registry : Asthma & COPD
  • National Bleeding Disorder Registry

  National Renal Registry - Malaysian Dialysis and Transplant Registry

Year Started : 1992
Sponsor : Malaysian Society of Nephrology (MSN)
Association of Dialysis Medical Assistants and Nurses (ADMAN)
Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to 2010 : 41
Total data submission, cumulative up to year 2010 : 47946

Introduction:

The Malaysian Dialysis and Transplant Registry is designed to describe the natural history and health outcomes of patients undergoing renal replacement therapies (RRT) for end-stage renal disease (ESRD), to determine the clinical effectiveness, safety and cost of the various therapies they received in the course of their illness, and to evaluate the healthcare services provided to such a patient population in Malaysia

Objectives:

  1. Determine the disease burden attributable to End Stage Renal Disease (ESRD), and its geographic and temporal trends in Malaysia.
  2. Determine the outcomes, and factors influencing outcomes of Renal Replacement Therapy.
  3. Evaluate the RRT program.
  4. Stimulate and facilitate research on RRT and ESRD.
  5. Maintain the national renal transplant waiting list.

  National Renal Registry - Malaysian Registry of Renal Biopsy

Year Started : 2005
Sponsor : Malaysian Society of Nephrology
Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to Sept 2010 : 44
Total data submission, cumulative up to Sept 2010 : 5474

Introduction:

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 2005.

Objectives:

  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.

  National Transplant Registry

Year Started : 2003
Sponsor : Malaysian Society of Transplantation
Co-Sponsor :

Clinical Research Centre
Ministry Of Health

Cumulative SDP recruitment up to Sept 2010 : 160
Total data submission, cumulative up to year 2010

  • Bone Marrow Transplant : 1853
  • Cornea Transplant : 1090
  • Liver Transplant : 111
  • Heart and lung Transplant : 24
  • heart valve Transplant : 200
  • Bone and tissue Transplant : 150

Introduction:

The National Transplant Registry (NTR) is designed to describe the natural history and health outcomes of patients who have undergone organ or tissue transplant, to determine the clinical effectiveness and safety of the various immunosuppressive drugs treatment regimens used, and to evaluate the healthcare services provided to such patient population in Malaysia.

Objectives:

  1. Determine the frequency and distribution of all types of transplantation activity in Malaysia
  2. Determine the outcomes of transplantation
  3. Determine the factors influencing outcomes of transplantation
  4. Evaluate transplantation services in the country
  5. Stimulate and facilitate research on transplantation and its management

  National Eye Database

Year Started : 2002
Sponsor :

Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to June 2010 : 39
Total data submission, cumulative up to year 2010 :

  1. Cataract Surgery Registry : 77866
  2. Glaucoma Registry : 7608
  3. Contact Lens Related Corneal Ulcer Surveillance: 256
  4. Diabetic Eye Registry : 41207
  5. Retinoblastoma Registry : 89
  6. Age Related Macular Degeneration (AMD) : 144
  7. Ophthalmology Service Census : 1339

Introduction:


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. NED collects data on incidences and distributions, and evaluates risk factors as well as treatment outcome of cataract, diabetic retinopathy, glaucoma and contact lens related corneal ulcer.

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.

Objectives:

  1. 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, and natural history. These are useful information on health burden arising of eye diseases.
  2. To determine treatment outcomes, and factors influencing outcomes of cataract surgery. This serves the needs of outcome assessment.
  3. To provide information necessary to evaluate ophthalmology services through census and key performance indicator gathered. This serves the need of accountability.
  4. 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.
  5. 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.

  National Mental Health Registry (NMHR)

Year Started : 2003
Sponsor :

Ministry Of Health

Co-Sponsor :
  • Psychiatry and Mental Health Services
  • Bahagian Pembangunan Kesihatan Keluarga
  • Jabatan Kesihatan Awam
  • Bahagian Perkembangan Perubatan
  • Clinical Research Centre HKL.

Cumulative SDP recruitment up to June 2010 : 205 Total data submission, cumulative up to June 2010 : 16529

Introduction:

The National Mental Health Registry (NMHR) collects information about patients with mental disorders in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatments in the country. Such information is useful in 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.

Objectives:

  1. To determine the disease burden attributable to Schizophrenia by quantifying its morbidity, and its geographic and temporal trends in Malaysia.
  2. To identify subgroups in the population at high risk of Schizophrenia to whom prevention effort should be targeted.
  3. To identify potential risk factors involved in Schizophrenia
  4. To evaluate the treatment, control and prevention of Schizophrenia.
  5. To stimulate and facilitate epidemiological research on Schizophrenia, e.g. generating hypotheses on etiology.

  Malaysian Liver Registry

Year Started : 2000
Sponsor : Ministry Of Health
Clinical Research Centre
Malaysian Liver Foundation

Cumulative SDP recruitment up to June 2010 : 12
Total data submission, cumulative up to June 2010 : 3684

Introduction: 

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 category. 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.

  Malaysian National Neonatal Registry

Year Started : 2003
Sponsor : MOH Pediatrics & Perinatal Society of Malaysia

Cumulative SDP recruitment up to June 2010 : 34
Total data submission , cumulative up to June 2010 : 60584

Introduction:


Malaysian National Neonatal Registry is establised to study the outcome of sick babies admitted to Neonatal Intensive Care Units (NICUs) in the country. It was recognized 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 

The MNNR proper was then launched on 1st January 2004 and the first three MNNR reports for the years 2004, 2005 and 2006 have been published. 2007 reports to be distributed soon.

Objectives:

  1. 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.
  2. Study the mortality and some morbidities of babies admitted to NICU in participating hospitals.
  3. Calculate the perinatal, neonatal, and stillbirth mortality rates of inborn babies.
  4. Compare outcomes between various centres.
  5. Develop indicators for standard of care in various areas e.g. 'Acceptable septicaemic rates in NICUs'.
  6. Study outcome of very low birth weight babies.
  7. Stimulate and facilitate research on neonatal critical illness and its management.

  National Trauma Database

Year Started : 2006
Sponsor :

Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to June 2010 : 13
Total data submission, cumulative up to June 2010 : 5095

Introduction:

The National Trauma Database (NTrD) collects 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.

Objectives:

  1. 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.
  2. Determine the outcome and probability of survival of the trauma patients.
  3. Evaluate the major trauma management in the participating hospitals and to come up with guidelines for improved trauma care.
  4. Determine the extent improvements introduced have been achieved.
  5. Stimulate and facilitate research on major trauma and its management.

  National Cardiovascular Disease Database (NCVD)

1. Acute Coronary Syndrome (ACS) Registry
Year Started : 2006
Sponsor :

MOH Cardiology

Co-Sponsor : National Heart Association of Malaysia

Cumulative SDP recruitment up to year 2010 : 16
Total data submission , cumulative up to June 2010 : 15365


2. Percutaneous Coronary Intervention (PCI) Registry
Year Started : 2007
Sponsor :

MOH Cardiology & National Heart Association of Malaysia

Co-Sponsor : National Heart Association of Malaysia

Cumulative SDP recruitment up to June 2010 : 12 (list of SDPs) Total data submission , cumulative up to June 2010 : 13391

Introduction:


Cardiovascular disease (CVD) is a modern global disease which, despite recent advances in treatment, it continues to rise in incidence. When the search for epidemiological databases of cardiovascular disease begun, there was none to be found. Despite the paucity of real useful data, the records of government hospital admissions and deaths collected by the Ministry of health indicated that at least Coronary artery disease (CAD) had been the leading cause of admission and non-accidental death for the last 10 years. As it is now cardiovascular disease accounted for 25% of all deaths in Malaysia. In 2001, ACS apparently accounted for nearly 35 000 acute admission into government hospitals in Malaysia.

The National Cardiovascular Disease Database (NCVD)is ongoing systematic collection, analysis and interpretation of cardiovascular disease data, 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.

Objectives:

  1. Determine the number and the time trend of acute coronary syndromes in Malaysia.
  2. Determine the socio demographic profiles of these patients to better identify the high-risk group in our Malaysian population.
  3. Determine the efficiency of, and adherence to current guidelines of treatment guidelines
  4. Determine the number, evaluate and monitor the outcomes of percutaneous coronary intervention (PCI) based on selected performance indicators.
  5. Determine the cost to the nation by cardiovascular disease and the cost-effectiveness of treatment and prevention programs
  6. Stimulate and facilitate research of cardiovascular disease using this database.

  Malaysian Dermatology Registry

1. Malaysian Psoriasis Registry
Year Started : 2007
Sponsor :

Malaysian Society of Dermatology & MOH Dermatology

Cumulative SDP recruitment up to September 2010: 18
Total data submission , cumulative up to September 2010 : 7353


2. Skin Biopsy Registry
Year Started : 2009
Sponsor :

MOH Cardiology & National Heart Association of Malaysia

Cumulative SDP recruitment up to September 2010 : 1 
Total data submission , cumulative up to Septemebr 2010 : 500

Introduction:


National Dermatology Registry (DermReg) is an ongoing systematic collection, analysis and interpretation of data pertaining to skin diseases and related services in Malaysia. This will enable us to know the the natural history, outcome and quality of life issues of skin diseases, as well as the effectiveness, safety and accessibility of various treatment modalities. This information is useful in assisting the Ministry of Health, non-governmental organizations, private healthcare providers and industry in planning, development and continuous improvement of services and facilities in the prevention and control of skin diseases. 

DermRegis a nationwide project which aims to integrate all dermatological patient registries and databases developed in Malaysia.

Registries under DermReg include: 
Malaysian Psoriasis Registry (MPR)
Diagnostic Skin Biopsy Registry (DSBR)

  National Suicide Registry (NSRM)

Year Started : 2007
Sponsor : Ministry Of Health
Psychiatric and mental health services, MOH
Forensic Medicine Services, MOH
Clinical Research Centre

Cumulative SDP recruitment up to June 2010 : 127
Total data submission, cumulative up to June 2010 : 552

Introduction: 

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.

  National Cancer Patient Registry- Oncology

Year Started : 2007
Sponsor : Ministry Of Health

Cumulative SDP recruitment up to June 2010 : 1
Total data submission, cumulative up to June 2010 : 5319

Introduction:


This registry is an ongoing systematic collection, analysis and interpretation of data designed to evaluate the health outcomes of patients with Cancers undergoing treatment at participating clinical centres. The general objectives of the patient registry are:-

  1. Describe the natural history of a disease, treatment modified or otherwise
  2. Determine effectiveness (clinical & cost) of treatments for a disease
  3. Monitor safety and harm of products and services used in the treatment of a disease
  4. Evaluating access to and quality of treatment services for a disease

  National Cancer Patient Registry – Breast CA

Year Started : 2008
Sponsor : Ministry Of Health

Cumulative SDP recruitment up to June 2010 : 2
Total data submission, cumulative up to June 2010 : 772

Introduction:

This registry is an ongoing systematic collection, analysis and interpretation of data designed to evaluate the health outcomes of patients with breast cancer whom fit the inclusion criteria from those that are referred to the participating centers from 2008 – 2010. All cases will be followed up for 3 years. The general objectives of the patient registry are similar as NCPR oncology as the above mentioned.

  National Cancer Patient Registry-Hematology Maligancy (NCPR-HM)

Year Started : 2008
Sponsor : Ministry Of Health

Cumulative SDP recruitment up to June 2010 : 9
Total data submission, cumulative up to June 2010 : 2144

Introduction:


This registry is an ongoing systematic collection, analysis and interpretation of data designed to evaluate the health outcomes of patients with haematological malignancy (Acute and chronic leukemias, Myelodysplasia and the Lymphomas) from participating centers.The general objectives of the patient registry are similar as NCPR oncology as the above mentioned.

  NCPR - Colorectal Cancer

Year Started : 2007
Sponsor :

Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to June 2010 : 18
Total data submission , cumulative up to June 2010 : 1348

Introduction:


Recent studies have shown an increasing incidence of colorectal cancer in Asian populations. Colorectal cancer is the third commonest cause of cancer-related mortality in Malaysia. 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:

  1. Determine the prevalence of colorectal cancer in Malaysia.
  2. Determine the socio-demographic profiles of these patients.
  3. Determine the risk factors in the patients with colorectal cancer.
  4. Determine the histological types and stages of presentation of colorectal cancer.
  5. Evaluate and monitor the outcomes of surgery and oncology therapy based on selected performance indicators such as
    1. disease-free survival rates
    2. mortality
    3. complications of treatment
    4. side-effects of treatment
    5. patient's quality of life
  6. Determine the cost burden to the nation by colorectal cancer and the cost-effectiveness of treatment and prevention programs.

  National Cancer Patient Registry - Nasopharyngeal Cancer

Year Started : 2007
Sponsor :

Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to June 2010 : 45
Total data submission, cumulative up to year 2010 : 1907

Introduction:


Nasopharyngeal carcinoma is a prevalent cancer in Malaysia. Therefore this multi-centre prospective study is designed to collect and analyze the pattern of presentation and clinical outcome of NPC patients in Malaysia. In addition to that, in some centers, samples of tissue (and possibly blood) of all suspected cases of nasopharyngeal carcinoma are also collected. 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. The data collected is useful for incidence analysis, prevalence analysis, mortality analysis, patient's morbidity data and remission rate and facilitate etiological studies.

Objectives:


Primary Objectives

  1. To establish a national NPC clinical database
  2. To establish a national NPC tissue bank

Secondary Objectives

  1. To describe the crude and relative survival of NPC patients.
  2. To determine the predictors of poor survival.
  3. To determine the post treatment morbidity rates in terms of recurrence (both local and distant failures).
  4. To determine the side effects (toxicity) experienced by NPC patients undergoing radiotherapy and / or chemotherapy.
  5. To identify predictors of post treatment complications (morbidity).
  6. To enable the identification, validation and characterization of new biomarkers, including markers for disease detection, classification, prognosis and therapy.
  7. To provide health care evaluation & appraisals.

  National Orthopaedic Registry (NORM) Diabetic Hand and Foot Disorder

Year Started : 2008
Sponsor :

Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to June 2010 : 18
Total data submission, cumulative up to year 2010 : 2389

Introduction:


The National Orthopaedic Registry of Malaysia is designed to describe the natural history and health outcomes of patients undergoing both diabetic foot/hand and hip fracture, to determine the clinical effectiveness, safety and cost of the various therapies they received in the course of their illness, and to evaluate the healthcare services provided to such a patient population in Malaysia.

Objectives:

  1. To determine the socio demographic profiles and the high risk group in our Malaysian setting.
  2. To determine the health educational and preventive programme among our patients.
  3. To determine the complications and the workload in MOH orthopaedic ward.
  4. To determine the current practice among orthopaedic surgeon in our country in regards to the guidelines; benchmarking of treatment patterns and patient outcomes.
  5. To facilitate service improvements, by providing robust nationality comparable data.
  6. To stimulate and facilitate research.

  National Orthopaedic Registry (NORM) Hip Fracture

Year Started : 2008
Sponsor :

Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to June 2010 : 18
Total data submission, cumulative up to year 2010 : 794

Introduction:

The National Orthopaedic Registry is designed to describe the natural history and health outcomes of patients undergoing hip fracture, to determine the clinical effectiveness, safety and cost of the various therapies they received in the course of their illness, and to evaluate the healthcare services provided to such a patient population in Malaysia.

Objectives:

  1. Determine the prevalence and type of hip fracture amongst those aged 50 and above admitted to the orthopedic wards of the MOH hospitals.
  2. Determine the demographic variables associated with hip fractures including age, sex, race, socio-economic status, pre-fracture residence, pre-fracture morbidity and mechanism of injury.
  3. Record factors related to the treatment of hip fractures including length of hospital stay, percentage of patients who undergo surgery and waiting time for surgery.
  4. Record the prevailing practices amongst orthopedic surgeons in MOH in the treatment of hip fractures in this group of patients including timing and type of surgery, use of antibiotic prophylaxis and prophylaxis against thrombo-embolic events.
  5. Study treatment outcomes including functional capacity of patients treated for hip fracture.
  6. Monitor trends in treatment.
  7. Facilitate improvements in care of patients with hip fracture.

  National Inflammatory Arthritis Registry

Year Started : 2008
Sponsor :

Arthritis Foundation of Malaysia
Ministry of Health 
Clinical Research Centre

Cumulative SDP recruitment up to year 2009 : 5
Total data submission, cumulative up to year 2010 : 915

Introduction:

The National Inflammatory Arthritis is designed to describe the natural history of rheumatoid arthritis, to determine the effectiveness of treatments, safety and cost of the various therapies they received in the course of their illness, and to evaluate the quality of treatment services provided to such a patient population in Malaysia.

A database of rheumatoid arthritis (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

  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 healthcare system. - Rate of mortality RA in Malaysia.

  National Urology Registry

1. Transurethral Resection of the Prostate(TURP) Registry

Year Started : 2009
Sponsor :

MOH Urology

Cumulative SDP recruitment up to June 2010 : 7
Total data submission , cumulative up to June 2010 : 329


2. Uro-oncology Patient Registry

Year Started : 2009
Sponsor :

MOH Urology

Cumulative SDP recruitment up to June 2010 : 6
Total data submission , cumulative up to June 2010 : 21

Introduction:


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. 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. 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.

  National Neurology Registry

Year Started : 2008
Sponsor :

Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to year 2009 : 3 
Total data submission, cumulative up to year 2010 : 396

Introduction:


The National Neurology Registry is established to continuously and systematically collect data on stroke and epilepsy patients in Malaysia. This patient registry will assist healthcare professionals or clinicians in evaluating the specific treatment and outcomes, examining factors that influence prognosis and quality of life, and describing disease patterns which relevant to stroke and epilepsy in Malaysia.

  National Obstetric & Gynaecology (NOR) & Maternal Mortality Register (MMR)

Year Started : 2009
Sponsor :

MOH Obstetric & Gynaecology

Cumulative SDP recruitment up to June 2010 : 14
Total data submission , cumulative up to June 2010 : 138674

Introduction:


Having a comprehensive database of patient information will enable continuous monitoring and evaluation of care management. Information on delivery rate and obstetric outcomes will 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 the diagnosis and treatment of complications and to identify improvements in care that will optimize patient and fetal outcome.

  National Nuclear Medicine Database

Year Started : 2009
Sponsor :

MOH nuclear medicine

Cumulative SDP recruitment up to June 2010 : 4
Total data submission , cumulative up to June 2010

Introduction:


The registry shall monitor the performance of care continuously in term of 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 assessing differentials for payment by third parties, or provide transparency through public reporting. Apart from that , the existence of registry would be able to stimulate and facilitate proper Nuclear Medicine treatment and function as a tool for clinicians to further improve their skills and add interest for further doing research . The database can be contributed to overall improvement of care in Malaysian hospitals .For policy makers, this database can help with regards to decision making on the resource allocation, improvement of quality control on equipments, training personnel and other strengthening areas which require improvement and provide optimal care to patients.

  Malaysian Registry of Intensive Care

Year Started : 2009
Sponsor :

Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to June 2010 : 37
Total data submission, cumulative up to year 2010 : 86923

Introduction:


National Audit of Adult Intensive Care Unit (NAICU) was established in 2003 as a quality initiative under Unit Kualiti with 14 ICUs from the state hospitals. Since early 2009, NAICU became part of the CRC Registry. The main objective of NAICU was to systematically review the current status of intensive care service with special reference to its demand, clinical practice, performance, outcome of patients and resource utilization. It also aimed to establish a national database on intensive care practice in Malaysia.

Objectives:

  1. 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.
  2. To conduct regular surveys on ICU facilities and manpower and the availability of intensive care service to meet its demand in Malaysia.
  3. 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.
  4. To review the trends and changing patterns of practice of intensive care and their correlation with patient outcome
  5. 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.

  National Hearing and Otology related Disease / Cochlear Implant

Year Started : 2009
Sponsor :

Ministry Of Health

Cumulative SDP recruitment up to June 2010 : 5
Total data submission, cumulative up to June 2010 : -

Introduction:

The National Hearing and Otology related disease/cochlear implant is relevant as evidence based data was needed to plan policies and programs for otorhinolaryngology, audiology and speech rehabilitation services of the country. This registry provide a national database reference of causes of ear disorders and hearing impairment or cochlear.

Objectives:

  1. To describe disease burden of hearing impairment in Malaysia
  2. To describe the characteristic of hearing loss, its aetiology, surgical and medical management, rehabilitation measures and outcomes including cochlear implantation in Malaysia.
  3. To describe variation of hearing loss across different age-groups, ethnicity, gender, socioeconomic status and geographical region in Malaysia.
  4. 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.
  5. To determine the possible causes for late referral hearing loss
  6. To determine the implication of hearing loss towards health financial/economic burden.

  National Radiology Registry

Year Started : 2009
Sponsor :

Ministry Of Health
Clinical Research Centre

Cumulative SDP recruitment up to June 2010 : 6
Total data submission, cumulative up to year 2009 : -

Introduction:


National Radiology Registry was initiated in 2009 with 2 sub-registries which includes mammography registry and IV contrast Extravasation (ICE) registry. The objectives are mainly to measure impact of changes in practice, to collect key performance and operational indicators from imaging facilities and to establish benchmarks for improving their efficiency and quality and to improve the quality of patient care, positively influencing the socio-economics of the practice of radiology.

Objectives:

  1. To describe the profile of patients presenting to the Radiology Department
  2. Determine the sensitivity, specificity and accuracy of report
  3. Determine the complication of interventional procedures
  4. Evaluating access to and quality of non-interventional radiology services
  5. Evaluating access to and quality of interventional radiology services

  National Surgical Registry 
(Known before as Peri-Operative Mortarlity Review & Computerized Operation Theatre Documentation System)

Year Started : 2009
Sponsor :

MOH Surgery & MOH Anesthesia

Cumulative SDP recruitment up to June 2010 : COTDS (14) & ePOMR (41)
Total data submission, cumulative up to June 2010 : COTDS (497241) ePOMR (1053)

  Malaysia Cardiothoracic Registry (MyCare)

Year Started : 2009
Sponsor :

MOH Cardiac Surgery & MOH Cardiac Anesthesia

Cumulative SDP recruitment up to June 2010 : 4
Total data submission, cumulative up to June 2010 : 684

  National Chest Registry : Asthma & COPD

Year Started : 2009
Sponsor :

MOH Respiratory Medicine

Cumulative SDP recruitment up to June 2010 : 1
Total data submission, cumulative up to June 2010 : 42

  National Bleeding Disorder Registry

Year Started : 2009
Sponsor :

National Blood Bank of MOH

Cumulative SDP recruitment up to June 2010 : -
Total data submission, cumulative up to June 2010 : -