Health Policies for Rare Disease Patients: A Scoping Review.

OBJECTIVE: To identify and map the available evidence on the implementation of public health policies directed at individuals with rare diseases, and to compare the implementation of these health policies between Brazil and other countries. METHOD: A scoping review guided by the PRISMA-ScR and JBI checklists. The search for articles was conducted in eight electronic databases, MEDLINE/Pubmed, Embase, Cochrane Library, Web of Science, Scopus, CINAHL, PsycINFO, and LILACS, using controlled descriptors, synonyms, and keywords combined with Boolean operators. All steps of this review were independently conducted by two researchers. The selected studies were classified by evidence hierarchy, and a generic quantitative tool was used for the assessment of the studies. RESULTS: A total of 473 studies were identified, of which 13 which met all the inclusion criteria were selected and analyzed. Of these studies, 61.5% (n = 8) had final scores equal to or greater than 70%, i.e., they were classified by this tool as being well-reported. The comparative analysis of international rare diseases demonstrates that public authorities' priorities and recommendations regarding this topic also permeate and apply to the Brazilian context. CONCLUSIONS: The evaluation and monitoring of public policies directed at rare disease patients are urgent and necessary to improve and implement such policies with less bureaucracy and more determination for this unique population that requires timely and high-quality care.

Effectiveness of mass testing for control of COVID-19: a systematic review protocol.

INTRODUCTION: Since March 2020, when the COVID-19 outbreak has been deemed a pandemic by the WHO, the SARS-CoV-2 spreading has been the focus of attention of scientists, authorities, public health agencies and communities around the world. One of the great concerns and challenges, mainly in low-income and middle-income countries, is the identification and monitoring of COVID-19 cases. The large-scale availability of testing is a fundamental aspect of COVID-19 control, but it is currently the biggest challenge faced by many countries around the world. We aimed to synthesise and critically evaluate the scientific evidence on the influence of the testing capacity for symptomatic individuals in the control of COVID-19. METHODS AND ANALYSIS: A systematic review will be conducted in eight databases, such as Medical Literature Analysis and Retrieval System Online, ISI-of-Knowledge, Cochrane Central Register of Controlled Trials, Embase, SCOPUS, Latin American and Caribbean Health Sciences Literature, PsycINFO and Chinese National Knowledge Infrastructure, from inception to 30 July 2020. No restriction regarding the language, publication date or setting will be employed. Primary outcomes will include the sensitivity as well as the specificity of the tests for COVID-19. Study selection will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist. Methodological assessment of the studies will be evaluated by the Cochrane Risk-of-Bias tool for randomised controlled trials, the MINORS for non-randomised studies and the Newcastle-Ottawa Scale for cohort or case-control studies. Findings will be structured according to the test type and target population characteristics and focused on the primary outcomes (sensitivity and specificity). Moreover, if sufficient data are available, a meta-analysis will be performed. Pooled standardised mean differences and 95% CIs will be calculated. Heterogeneity between the studies will be determined by I2 statistics. Subgroup analyses will also be conducted. Publication bias will be assessed with funnel plots and Egger's test. Heterogeneity will be explored by random effects analysis. ETHICS AND DISSEMINATION: Ethical approval is not required. The results will be disseminated widely via peer-reviewed publication and presentations at conferences related to this field. PROSPERO REGISTRATION NUMBER: CRD42020182724.