Global epidemiology of mucopolysaccharidosis type III (Sanfilippo syndrome): an updated systematic review and meta-analysis

2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Weijing Kong ◽  
Shanshan Wu ◽  
Jing Zhang ◽  
Cheng Lu ◽  
Yingxue Ding ◽  
...  
Keyword(s):  
Public Health ◽  
Systematic Review ◽  
Decision Making ◽  
Meta Analysis ◽  
Birth Prevalence ◽  
Public Health Decision ◽  
Live Births ◽  
Health Decision Making ◽  
Global Epidemiology ◽  
Health Decision

Abstract Objectives Mucopolysaccharidosis III, an autosomal recessive lysosomal storage disorder, is characterized by progressive mental retardation and behavioral problems. Meta-analysis of global mucopolysaccharidosis III epidemiology, which serves as a fundamental reference for public health decision-making, was not available prior to this study. To provide a systematic review and meta-analysis of birth prevalence of mucopolysaccharidosis III in multiple countries. Methods MEDLINE and EMBASE databases were searched for original research articles on the epidemiology of mucopolysaccharidosis III from inception until 1st July, 2020. A checklist adapted from STROBE (STrengthening the Reporting of OBservational studies in Epidemiology) was used to assess the quality of all studies involved. Meta-analysis, adopting a random effects logistic model, was performed to estimate pooled birth prevalence of mucopolysaccharidosis III and its subtypes. Results Twenty-five studies screened out of 1,826 records were included for data extraction. The pooled global mucopolysaccharidosis III birth prevalence was 0.76 cases (95% CI: 0.57–0.96) per 100,000 live births. The pooled global birth prevalence of mucopolysaccharidosis III subtypes (A, B, and C) was 0.52 cases (95% CI: 0.33–0.72), 0.21 cases (95% CI: 0.12–0.30) and 0.01 cases (95% CI: 0.005–0.02) per 100,000 live births, respectively. Conclusions Based on the global population size (7.8 billion) and the life span of patients, there would be 12–19 thousand mucopolysaccharidosis III patients worldwide. To our knowledge, this is the first comprehensive systematic review that presented quantitative data fundamental for evidence-based public health decision-making by evaluating global epidemiology of mucopolysaccharidosis III.

scholarly journals The Use of Research Evidence in Public Health Decision Making Processes: Systematic Review

PLoS ONE ◽  
2011 ◽  
Vol 6 (7) ◽  
pp. e21704 ◽  
Author(s):  
Lois Orton ◽  
Ffion Lloyd-Williams ◽  
David Taylor-Robinson ◽  
Martin O'Flaherty ◽  
Simon Capewell
Keyword(s):  
Public Health ◽  
Systematic Review ◽  
Decision Making ◽  
Research Evidence ◽  
Public Health Decision ◽  
Health Decision Making ◽  
Health Decision ◽  
Decision Making Processes ◽  
Use Of Research

scholarly journals The NCCMT’s dynamic model for evidence-informed public health

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
E Clark ◽  
S Neil-Sztramko ◽  
M Dobbins
Keyword(s):  
Public Health ◽  
Decision Making ◽  
Research Evidence ◽  
Decision Makers ◽  
Local Data ◽  
Public Health Decision ◽  
Health Decision Making ◽  
Political Preferences ◽  
Health Decision ◽  
Structured Approach

Abstract Issue It is well accepted that public health decision makers should use the best available research evidence in their decision-making process. However, research evidence alone is insufficient to inform public health decision making. Description of the problem As new challenges to public health emerge, there can be a paucity of high quality research evidence to inform decisions on new topics. Public health decision makers must combine various sources of evidence with their public health expertise to make evidence-informed decisions. The National Collaborating Centre for Methods and Tools (NCCMT) has developed a model which combines research evidence with other critical sources of evidence that can help guide decision makers in evidence-informed decision making. Results The NCCMT's model for evidence-informed public health combines findings from research evidence with local data and context, community and political preferences and actions and evidence on available resources. The model has been widely used across Canada and worldwide, and has been integrated into many public health organizations' decision-making processes. The model is also used for teaching an evidence-informed public health approach in Masters of Public Health programs around the globe. The model provides a structured approach to integrating evidence from several critical sources into public health decision making. Use of the model helps ensure that important research, contextual and preference information is sought and incorporated. Lessons Next steps for the model include development of a tool to facilitate synthesis of evidence across all four domains. Although Indigenous knowledges are relevant for public health decision making and should be considered as part of a complete assessment the current model does not capture Indigenous knowledges. Key messages Decision making in public health requires integrating the best available evidence, including research findings, local data and context, community and political preferences and available resources. The NCCMT’s model for evidence-informed public health provides a structured approach to integrating evidence from several critical sources into public health decision making.

scholarly journals Contributions in the field of Public Health for decision-making in health

2017 ◽  
Vol 27 (2) ◽  
pp. 128 ◽  
Author(s):  
Luiz Antônio Tavares Neves
Keyword(s):  
Public Health ◽  
Decision Making ◽  
Motor Development ◽  
Growth And Development ◽  
Human Growth ◽  
Public Health Decision ◽  
Health Decision Making ◽  
Scientific World ◽  
Health Decision ◽  
Human Growth And Development

  Brazil has made a wide development and contribution in the field of Public Health. These contributions have maximized public health decision-making, which is a factor of great importance for the maintenance of health of a given population, either in the prevention of disease, as is the case of immunizations or with actions in Health Promotion, improving the quality of life of the affected population. Thus, the Journal of Human Growth and Development has contributed enormously to the dissemination of knowledge, not only in Brazil but also in the world making a major effort with its publications in English which is the preferred language of the modern scientific world. It was evidenced the importance of research in the investigation of better ways to obtain the public health of a given community, bringing discussion of themes that involve aspects of human growth and development such as nutritional aspects, sexuality, motor development, covering situations and diseases as obesity, cerebral palsy, dyslexia and violence. The Journal of Human Growth and Development has maintained the tradition of approaching the different aspects that involve clinical practice for people and for Public Health. 

Public Health Decision Making and Risk Perception

2010 ◽  
pp. 729-750 ◽  
Author(s):  
Julie S. Downs ◽  
Wändi Bruine de Bruin ◽  
Baruch Fischhoff ◽  
Elizabeth A. Walker
Keyword(s):  
Public Health ◽  
Decision Making ◽  
Risk Perception ◽  
Public Health Decision ◽  
Health Decision Making ◽  
Health Decision
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