Registration of research proposal to a publicly accessible website with searchable function allows information sharing and ensures research transparency. The National Institutes of Health Malaysia, realising the importance of research registration, established the National Medical Research Register (NMRR) in 2007. The NMRR functions more than just a local register: it also links to ethics approval and MOH medical research grant application. It thus facilitates researchers in their application to the Ministry of Health Research and Ethics Committee (MREC) and for Ministry of Health research grant. In addition, MREC committee members can review research protocol on NMRR website, thus saving much time and resources. From May 2007 till December 2009, more than 3000 people have registered as NMRR public users and more than 1000 research proposals have been uploaded in NMRR. The number of registration of research proposals, clinical trials and industrial sponsored trials steadily increased from year 2007 to year 2009. The web-based NMRR is the first research register in the world that links research proposal registration to ethical review and research grant application. Its future plan is to be linked with publication. Therefore, it is indeed an innovation that Malaysians should be proud of.
This paper aims to highlight the importance of aspiring to achieve universal reporting of maternal deaths as a part of taking responsibility for these avoidable tragedies. The paper first discusses the reasons for reporting maternal deaths, distinguishing between individual case notification and aggregate statistics. This is followed by a summary of the status of reporting at national and international levels, as well as major barriers and facilitators to this process. A new framework is then proposed - the REPORT framework, designed to highlight six factors essential to universal reporting. Malaysia is used to illustrate the relevance of these factors. Finally, the paper makes a Call to Action by FIGO to promote REPORT and to encourage health professionals to play their part in improving the quality of reporting on all maternal deaths - not just those directly in their care.
A registry of patients with end stage renal disease was started from 1st January 1990 at Hospital Sultanah Aminah, Johor Baru. There were 126 patients in 1990 and 129 in 1991. The peak age was 31 to 60 years old; males outnumbered females 1.5:1. Forty-three to fifty-six percent presented with small kidneys. Seventeen to twenty percent of patients had diabetes mellitus. In 1991, the racial distribution of patients was Malay: 50.4%, Chinese: 39.5%, Indian: 7.8% and others: 2.3%. The incidence of end stage renal disease in Johor Baru district was 79 per million per year in 1990 and 86 per million in 1991.
Bariatric surgery has become a popular treatment modality for obesity in Malaysia. However, the absence of a standardized national registry has led to paucity of information pertaining to quantity and quality of bariatric surgery in Malaysia. In the absence of a national registry, a nationwide survey was conducted with the aim of establishing a fair estimate of case volume based on type of procedure and to identify the total number of surgeons performing those procedures at their respective centers from 1st January 2010 to 31st December 2016. For this purpose, a questionnaire was designed and distributed to bariatric surgeons throughout Malaysia. The data along with a brief narrative of the history and progress of bariatric surgery in Malaysia is presented in this report.
Cancer registries help to establish and maintain cancer incidence reporting systems, serve as a resource for investigation of cancer and its causes, and provide information for planning and evaluation of preventive and control programs. However, their wider role in directly enhancing oncology drug access has not been fully explored. We examined the value of cancer registries in oncology drug access in the Asia-Pacific region on three levels: (1) specific registry variable types; (2) macroscopic strategies on the national level; and (3) a regional cancer registry network. Using literature search and proceedings from an expert forum, this paper covers recent cancer registry developments in eight economies in the Asia-Pacific region - Australia, China, Hong Kong, Malaysia, Singapore, South Korea, Taiwan, and Thailand - and the ways they can contribute to oncology drug access. Specific registry variables relating to demographics, tumor characteristics, initial treatment plans, prognostic markers, risk factors, and mortality help to anticipate drug needs, identify high-priority research area and design access programs. On a national level, linking registry data with clinical, drug safety, financial, or drug utilization databases allows analyses of associations between utilization and outcomes. Concurrent efforts should also be channeled into developing and implementing data integrity and stewardship policies, and providing clear avenues to make data available. Less mature registry systems can employ modeling techniques and ad-hoc surveys while increasing coverage. Beyond local settings, a cancer registry network for the Asia-Pacific region would offer cross-learning and research opportunities that can exert leverage through the experiences and capabilities of a highly diverse region.
Very few registries worldwide focus on clinical outcomes of stem cell therapy (SCT) as the large number of applications and rapid development of the field complicates registry design considerably. The National Stem Cell Therapy Patient Registry of Malaysia aims to accommodate this by using a main protocol which covers the overall design and administration of the registry, and condition-specific sub-protocols which deal with outcome measures. The registry will start with a few sub-protocols covering existing modes of SCT in Malaysia, with new sub-protocols released periodically as the need arises.
Melioidosis has a high annual incidence and mortality rate in Pahang, Malaysia. We initiated the first melioidosis registry in the country on 1st July 2005 to improve the management of melioidosis in the state. Continuous medical education on melioidosis was carried out in all hospitals in the state to highlight the magnitude of the disease and to educate the doctors on the treatment of the disease. All culture confirmed cases were registered and analysed. During the one-year study period from 1st July 2005 till 30th June 2006, a total of 63 patients had positive culture for Burkholderia pseudomallei. The calculated annual incidence of melioidosis in Pahang state was 4.3 per 100,000 population per year (Adult, 6.0 per 100, 000 population per year and paediatric, 1.6 per 100,000 population per year). There were 55 Malays (87.3%), three Chinese (4.8%), four aborigines (6.3%) and one Indonesian. Nine (14.3%) were less than 18 years old. The median age was 49 years (range: 1-68 years). Only one patient (1.6%) had a previous history of confirmed melioidosis. With this programme, we had observed a decline in adult mortality from 54% to 44%, although this was not statistically significant. However, culture-confirmed relapses had dropped from 19% to nil. Several measures need to be taken to decrease mortality from melioidosis in endemic countries.
Research in schizophrenia has advanced tremendously. One hundred and seventy five articles related to Schizophrenia were found from a search through a database dedicated to indexing all original data relevant to medicine published in Malaysia between the years 2000-2013. This project aims to examine published research articles, in local and international journals in order to provide a glimpse of the research interest in Malaysia with regards to schizophrenia. Single case study, case series report, reviews and registry reports were not included in this review. Medication trial, unless it concerned a wider scope of psychopharmacology was also excluded from this review. A total of 105 articles were included in this review. Despite numerous genetics studies conducted and published, a definitive conclusion on the aetiology or mechanism underlying schizophrenia remains elusive. The National Mental Health - Schizophrenia Registry (NMHR) proved to be an important platform for many studies and publications. Studies stemmed from NMHR have provided significant insight into the baseline characteristic of patients with schizophrenia, pathway to care, and outcomes of the illness. International and regional collaborations have also encouraged important work involving stigma and discrimination in schizophrenia. Ministry of Health's hospitals (MOH) are the main research sites in the country with regards to schizophrenia research. Numbers of schizophrenia research are still low in relation to the number of universities and hospitals in the country. Some of the weaknesses include duplication of studies, over-emphasising clinical trials and ignoring basic clinical research, and the lack of publications in international and regional journals.
All around the world, there is growing evidence of the association between psoriasis and comorbidities which increase the risk of cardiovascular disease. This study aims to determine the prevalence of various comorbidities among adult psoriasis patients in Malaysia. A cross-sectional study was conducted among patients in the Malaysian Psoriasis Registry from January 2007 to December 2008. A total of 2,267 adult patients with psoriasis from 13 dermatology centers were included. Prevalence of various comorbidities were: hypertension 25.9%, diabetes mellitus 17.7 %, dyslipidaemia 17.8%, overweight 33.2%, obesity 20.7%, ischaemic heart disease 5.8% and cerebrovascular disease 1.4%. These comorbidities were more prevalent in patients with psoriasis of late-onset and longer duration. Active screening of these comorbidities in all adult psoriasis patients is recommended.
Background: Psoriasis is a chronic inflammatory skin disease affecting 2-3% of the general population.
Aim: To evaluate the epidemiology and clinical characteristics of patients with psoriasis who seek treatment in outpatient dermatology clinics throughout hospitals in Malaysia.
Materials and Methods: Data were obtained from the Malaysian Psoriasis Registry (MPR). All patients (aged 18 and above) who were notified to the registry from July 2017 to December 2017 were included in this study.
Results: Among 15,794 patients, Malays were the most common (50.4%), followed by Chinese (21.4%), Indian (17.6%), and others (10.6%). The mean age onset of psoriasis for our study population was 35.14 ± 16.16 years. Male to female ratio was 1.3 : 1. 23.1% of patients had positive family history of psoriasis. The most common clinical presentation was chronic plaque psoriasis (85.1%), followed by guttate psoriasis (2.9%), erythrodermic psoriasis (1.7%), and pustular psoriasis (1.0%). Majority of our patients (76.6%) had a mild disease with BSA < 10%. 57.1% of patients had nail involvement, while arthropathy was seen in 13.7% of patients. Common triggers of the disease include stress (48.3%), sunlight (24.9%), and infection (9.1%). Comorbidities observed include obesity (24.3%), hypertension (25.6%), hyperlipidemia (18%), diabetes mellitus (17.2%), ischaemic heart disease (5.4%), and cerebrovascular disease (1.6%). The mean DLQI (Dermatology Life Quality Index) was 8.5 ± 6.6. One-third (33.1%) of the patients had a DLQI score of more than 10, while 14.2% of patients reported no effect at all.
Conclusion: Our study on the epidemiological data of adult patients with psoriasis in Malaysia showed a similar clinical profile and outcome when compared to international published studies on the epidemiology of psoriasis.
The Malaysian Psoriasis Registry, established in 1998, is the first skin disease clinical registry in Malaysia. It aims to provide useful data on various aspects of psoriasis. Following an extensive revision of the registry form in 2007, a total of 509 psoriasis patients from 10 government dermatologic centres were reviewed in a three month pilot study. The onset of psoriasis was during the second to fourth decade of life in the majority of patients. There was no sexual and ethnic predilection. A positive family history was present in 21.2%, and more common in patients with younger disease onset. The main aggravating factors of psoriasis were stress, sunlight and infection. Plaque psoriasis was the commonest clinical type (80.9%). Joint disease was present in 17.3% of patients, among which mono-/oligoarticular type being the commonest. Nail changes occurred in 68%. More psoriasis patients were overweight and obese compared to the normal population. The mean Dermatologic Life Quality Index (DLQI) score was 8.08 +/- 6.29, and changes during subsequent follow-up may reflect therapeutic effectiveness. This study enabled evaluation of the revised registry form and helped in identifying shortcomings in the implementation of the registry.
Treatment option of Haematological malignancies has expanded over the last decade. The outcome of treatment is expected to be better compare to previously. However, study of treatment outcome for haematological malignancies has not been carried out in Malaysia. The goal of this study is to measure the treatment outcome in patients with haematological malignancy.
Cancer burden in Malaysia is increasing. Although there have been improvements in cancer treatment, these new therapies may potentially cause an exponential increase in the cost of cancer treatment. Therefore, justification for the use of these treatments is mandated. Availability of local data will enable us to evaluate and compare the outcome of our patients. This will help to support our clinical decision making and local policy, improve access to treatment and improve the provision and delivery of oncology services in Malaysia. The National Cancer Patient Registry was proposed as a database for cancer patients who seek treatment in Malaysia. It will be a valuable tool to provide timely and robust data on the actual setting in oncology practice, safety and cost effectiveness of treatment and most importantly the outcome of these patients.
Nasopharyngeal carcinoma (NPC) is a cancer which is common in Asia. We report the establishment and early results of a multi-institutional prospective study of nasopharyngeal carcinoma, which seeks to systematically collect data as well as blood and tumour tissue samples from patients diagnosed with nasopharyngeal cancer at six centres in Malaysia. A total of 484 confirmed NPC cases were reported from the six participating centres between 1st July 2007 and 29th February 2008. Of these, 225 were newly diagnosed cases, 53 were recurrent cases and 206 were in remission at the time of reporting. Amongst the newly diagnosed cases, the most common presenting symptom was the presence of neck lumps (42%). Ophthalmo-neurologic symptoms were the presenting symptoms of 11% of the new cases. The majority of cases (75%) presented at stage III/IV.