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BACKGROUND Rare diseases are conditions characterized by having a low prevalence in the general population, but collectively, it is estimated that they can affect up to 10% of the world population. Thus, rare diseases have a significant impact on public health systems worldwide. However, data, information, and knowledge regarding diagnoses, processes, and treatments for such diseases generally do not have a validated structuration available for use in different health services, making exchanging and reusing informational elements a complex task. Thus, investigating a minimum data set for ​​rare diseases is the central aspect to consider in this study. OBJECTIVE This systematic review aims to identify the minimum data sets used for RDs in healthcare networks worldwide. Subsequently, analyze such findings against the Brazilian Policy for Comprehensive Care for People with Rare Diseases and the World Health Organization guidelines and recommendations. To suggest a general minimum data set for rare diseases to improve the standardization and interoperability of data about diagnostic and care processes in the rare diseases area. METHODS For this systematic review, we used the Population, Concept, and Context methodology to define the guiding question of the review, which seeks to identify and map the variables used in the minimum datasets in healthcare networks worldwide. Subsequently, we used the research question to create the search strategy according to the MeSH descriptors. We inserted the search strategy defined in the chosen databases to select the first set of studies. We screened these studies through their abstract and, after that, through the full-text reading phase. Considering the established eligibility criteria, we finalized the selection stage of the review studies. Subsequently, we extract data and information from these articles in a structured way, using synthesis and analysis methods, to answer the research question. Throughout the process, we used the Prisma Checklist to ensure the quality of each step of this study. RESULTS Initially, we identified 407 studies from the selected databases. After all screening steps, 20 studies were included in the systematic review. These studies encompass 8 different study designs. Most of the datasets identified and mapped came from projects on the European continent. Results referring to America and Asia were also found. The variables used in rare disease records worldwide were identified and extracted. Subsequently, we used data science methods and clinical experience to structure and recommend a fundamental minimum standardized dataset for use in rare disease patient records in healthcare networks. CONCLUSIONS This study is a techno-social contribution that aims to consolidate a consistent information base for registering rare disease patients in health networks. To improve the ability to represent the real health scenario in each context of rare diseases. In addition to facilitating information sharing, health planning, and decision-making. CLINICALTRIAL CRD42021221593 INTERNATIONAL REGISTERED REPORT RR2-10.1016/j.procs.2021.12.034

RESUMO:Um problema que afeta diretamente a população mundial e o meio ambiente é a degradação da camada de ozônio. Devido aos buracos formados nessa camada, a cada dia a superfície terrestre recebe uma maior quantidade de radiação ultravioleta. Os raios que são emitidos acabam gerando grandes problemas, pois, além do câncer de pele, envelhecimento precoce e queimaduras na pele, têm potencial para diminuir o sistema imunológico das pessoas que a eles estão expostas. Neste contexto, o presente trabalho objetiva a preparação de películas para aplicação em janelas de hospitais possibilitando a proteção às radiações ultravioleta. As películas obtidas foram preparadas a partir de resíduos de filme stretch (polietileno) e estireno etileno butadieno estireno (SEBS). O filme stretch, utilizado como embalagem para pallets em estabelecimentos comerciais, indústrias entre outros, é bastante flexível, leve, transparente e tem uma massa unitária baixa ocasionando grande volume de resíduo gerado. A eficiência da película final foi testada a partir de análise de Espectroscopia no Ultravioleta-Visível que comprovou uma proteção mínima de 80% contra a radiação UV.Palavras-chave: Polietileno. Resíduos. Película. Radiação ultravioleta. ABSTRACT:The degradation of the ozone layer is a problem that directly affects the global population and the environment. Due to the holes formed in this layer, each day the earth's surface receives a greater amount of ultraviolet radiation. The rays that are emitted have been generating major problems as to skin cancer, premature aging and skin burns, and have potential to decrease the immune system of people. In this context, this work aims to prepare films for application in hospitals windows providing protection to ultraviolet radiation. The obtained films were prepared from residues of stretch film (polyethylene) and styrene ethylene butadiene styrene (SEBS). The stretch film is used as packaging for pallets in commercial establishments, industries and others, is very flexible, light, transparent and has a low bulk density leading to a large volume of waste generated. The efficiency of the final film was tested through analysis of ultraviolet-visible spectroscopy confirming a minimal UV protection of 80%.Keywords: Polyethylene. Waste. Film. Ultraviolet radiation. INTRODUÇÃOA camada de ozônio, que funciona como uma proteção contra diversos tipos de radiação está diminuindo lentamente devido a emissão dos gases cloro flúor carbono (CFCs) na atmosfera. Essa camada evita a passagem de grande parte da radiação ultravioleta emitida pelo Sol, mas, atualmente, vem sendo degradada pela ação do homem e se tornando mais fina em diversas regiões do planeta, originando assim os chamados buracos na camada de ozônio que fazem com que seja incidida uma quantidade maior e mais intensa de radiação sobre a superfície terrestre (IBAMA, 2008).A radiação ultravioleta, no espectro eletromagnético, se subdivide em três regiões: ultravioleta A (UVA), ultravioleta B (UVB) e ultravioleta C (UVC). A camada de ozônio não pr...

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Background The minimum data set (MDS) is a collection of data elements to be grouped using a standard approach to allow the use of data for clinical and research purposes. Health data are typically voluminous, complex, and sometimes too ambiguous to generate indicators that can provide knowledge and information on health. This complexity extends further to the rare disease (RD) domain. MDSs are essential for health surveillance as they help provide services and generate recommended population indicators. There is a bottleneck in international literature that reveals a global problem with data collection, recording, and structuring in RD. Objective This study aimed to identify and analyze the MDSs used for RD in health care networks worldwide and compare them with World Health Organization (WHO) guidelines. Methods The population, concept, and context methodology proposed by the Joanna Briggs Institute was used to define the research question of this systematic review. A total of 4 databases were reviewed, and all the processes were reported using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) methodology. The data elements were analyzed, extracted, and organized into 10 categories according to WHO digital health guidelines. The quality assessment used the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) checklist. Results We included 20 studies in our review, 70% (n=14) of which focused on a specific health domain and 30% (n=6) of which referred to RD in general. WHO recommends that health systems and networks use standard terminology to exchange data, information, knowledge, and intelligence in health. However, there was a lack of terminological standardization of the concepts in MDSs. Moreover, the selected studies did not follow the same standard structure for classifying the data from their MDSs. All studies presented MDSs with limitations or restrictions because they covered only a specific RD, or their scope of application was restricted to a specific context or geographic region. Data science methods and clinical experience were used to design, structure, and recommend a fundamental global MDS for RD patient records in health care networks. Conclusions Our study highlights the difficulties in standardizing and categorizing findings from MDSs for RD because of the varying structures used in different studies. The fundamental RD MDS designed in this study comprehensively covers the data needs in the clinical and management sectors. These results can help public policy makers support other aspects of their policies. We highlight the potential of our results to help strategic decisions related to RD. Trial Registration PROSPERO CRD42021221593; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=221593 International Registered Report Identifier (IRRID) RR2-10.1016/j.procs.2021.12.034