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  1. Carr JE
    Cult Med Psychiatry, 1978 Sep;2(3):269-93.
    PMID: 710174
    The phenomenon of amok is reviewed in order to demonstrate the heuristic value of an ethno-behavioral model of culture-bound syndromes. The notion that culture-bound syndromes share underlying common disease forms is rejected. Instead, the ethno-behavioral model postulates that culture-bound syndromes consist of culturally specific behavioral repertoires legitimated by culturally sanctioned norms and concepts, but with both behavior and norms acquired in accordance with basic principles of human learning universal to all cultures. Consistent with this model, amok is shown to be a common behavioral pathway for multiple precipitants (which may or may not include disease pathology), but with a distinct form and conceptualization which can be traced to the social learning practices and beliefs of the Malay.
  2. Tan EK, Carr JE
    Cult Med Psychiatry, 1977 Apr;1(1):59-67.
    PMID: 756354
    The authors present evidence of an indigenous diagnostic system by which Malay culture defines Amok, and of the disparate relations between individual conceptualization, behavior, and tradition which contributes to the labeling process. Amok is viewed as a cultural prescription for violent behavior in response to a given set of conditions. It is not a disease but rather a behavioral sequence, perceived as illness, that may be precipitated by various etiological factors. Finally, evidence is presented to support the hypothesis that traditional forms of Amok are being replaced by new variants in which psychopathology is increasingly evident.
  3. Carr JE, Tan EK
    Am J Psychiatry, 1976 Nov;133(11):1295-9.
    PMID: 984220
    In an attempt to discover how the phenomenon of amok is viewed within its indigenous culture, the authors studied and interviewed 21 subjects in West Malaysia who were labeled as amok. This investigation showed that both the subjects and the Malay culture view amok as psychopathology, that amok cases are disposed of in line with this view, and that the behavior of the amok person conforms to social expectations of the phenomenon. Despite cultural proscriptions, however, the act is purposive and motivated and is subtly sanctioned by Malay society.
  4. Pandya A, Yu YJ, Ge Y, Nagel E, Kwong RY, Bakar RA, et al.
    J Cardiovasc Magn Reson, 2022 01 06;24(1):1.
    PMID: 34986851 DOI: 10.1186/s12968-021-00833-1
    BACKGROUND: Although prior reports have evaluated the clinical and cost impacts of cardiovascular magnetic resonance (CMR) for low-to-intermediate-risk patients with suspected significant coronary artery disease (CAD), the cost-effectiveness of CMR compared to relevant comparators remains poorly understood. We aimed to summarize the cost-effectiveness literature on CMR for CAD and create a cost-effectiveness calculator, useable worldwide, to approximate the cost-per-quality-adjusted-life-year (QALY) of CMR and relevant comparators with context-specific patient-level and system-level inputs.

    METHODS: We searched the Tufts Cost-Effectiveness Analysis Registry and PubMed for cost-per-QALY or cost-per-life-year-saved studies of CMR to detect significant CAD. We also developed a linear regression meta-model (CMR Cost-Effectiveness Calculator) based on a larger CMR cost-effectiveness simulation model that can approximate CMR lifetime discount cost, QALY, and cost effectiveness compared to relevant comparators [such as single-photon emission computed tomography (SPECT), coronary computed tomography angiography (CCTA)] or invasive coronary angiography.

    RESULTS: CMR was cost-effective for evaluation of significant CAD (either health-improving and cost saving or having a cost-per-QALY or cost-per-life-year result lower than the cost-effectiveness threshold) versus its relevant comparator in 10 out of 15 studies, with 3 studies reporting uncertain cost effectiveness, and 2 studies showing CCTA was optimal. Our cost-effectiveness calculator showed that CCTA was not cost-effective in the US compared to CMR when the most recent publications on imaging performance were included in the model.

    CONCLUSIONS: Based on current world-wide evidence in the literature, CMR usually represents a cost-effective option compared to relevant comparators to assess for significant CAD.

  5. Vollstedt EJ, Madoev H, Aasly A, Ahmad-Annuar A, Al-Mubarak B, Alcalay RN, et al.
    PLoS One, 2023;18(10):e0292180.
    PMID: 37788254 DOI: 10.1371/journal.pone.0292180
    Parkinson's disease (PD) is the fastest-growing neurodegenerative disorder, currently affecting ~7 million people worldwide. PD is clinically and genetically heterogeneous, with at least 10% of all cases explained by a monogenic cause or strong genetic risk factor. However, the vast majority of our present data on monogenic PD is based on the investigation of patients of European White ancestry, leaving a large knowledge gap on monogenic PD in underrepresented populations. Gene-targeted therapies are being developed at a fast pace and have started entering clinical trials. In light of these developments, building a global network of centers working on monogenic PD, fostering collaborative research, and establishing a clinical trial-ready cohort is imperative. Based on a systematic review of the English literature on monogenic PD and a successful team science approach, we have built up a network of 59 sites worldwide and have collected information on the availability of data, biomaterials, and facilities. To enable access to this resource and to foster collaboration across centers, as well as between academia and industry, we have developed an interactive map and online tool allowing for a quick overview of available resources, along with an option to filter for specific items of interest. This initiative is currently being merged with the Global Parkinson's Genetics Program (GP2), which will attract additional centers with a focus on underrepresented sites. This growing resource and tool will facilitate collaborative research and impact the development and testing of new therapies for monogenic and potentially for idiopathic PD patients.
  6. Vollstedt EJ, Schaake S, Lohmann K, Padmanabhan S, Brice A, Lesage S, et al.
    Mov Disord, 2023 Feb;38(2):286-303.
    PMID: 36692014 DOI: 10.1002/mds.29288
    BACKGROUND: As gene-targeted therapies are increasingly being developed for Parkinson's disease (PD), identifying and characterizing carriers of specific genetic pathogenic variants is imperative. Only a small fraction of the estimated number of subjects with monogenic PD worldwide are currently represented in the literature and availability of clinical data and clinical trial-ready cohorts is limited.

    OBJECTIVE: The objectives are to (1) establish an international cohort of affected and unaffected individuals with PD-linked variants; (2) provide harmonized and quality-controlled clinical characterization data for each included individual; and (3) further promote collaboration of researchers in the field of monogenic PD.

    METHODS: We conducted a worldwide, systematic online survey to collect individual-level data on individuals with PD-linked variants in SNCA, LRRK2, VPS35, PRKN, PINK1, DJ-1, as well as selected pathogenic and risk variants in GBA and corresponding demographic, clinical, and genetic data. All registered cases underwent thorough quality checks, and pathogenicity scoring of the variants and genotype-phenotype relationships were analyzed.

    RESULTS: We collected 3888 variant carriers for our analyses, reported by 92 centers (42 countries) worldwide. Of the included individuals, 3185 had a diagnosis of PD (ie, 1306 LRRK2, 115 SNCA, 23 VPS35, 429 PRKN, 75 PINK1, 13 DJ-1, and 1224 GBA) and 703 were unaffected (ie, 328 LRRK2, 32 SNCA, 3 VPS35, 1 PRKN, 1 PINK1, and 338 GBA). In total, we identified 269 different pathogenic variants; 1322 individuals in our cohort (34%) were indicated as not previously published.

    CONCLUSIONS: Within the MJFF Global Genetic PD Study Group, we (1) established the largest international cohort of affected and unaffected individuals carrying PD-linked variants; (2) provide harmonized and quality-controlled clinical and genetic data for each included individual; (3) promote collaboration in the field of genetic PD with a view toward clinical and genetic stratification of patients for gene-targeted clinical trials. © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

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