Pervasive gaps in Amazonian ecological research

Biodiversity loss is one of the main challenges of our time,1,2 and attempts to address it require a clear un derstanding of how ecological communities respond to environmental change across time and space.3,4 While the increasing availability of global databases on ecological communities has advanced our knowledge of biodiversity sensitivity to environmental changes,5–7 vast areas of the tropics remain understudied.8–11 In the American tropics, Amazonia stands out as the world’s most diverse rainforest and the primary source of Neotropical biodiversity,12 but it remains among the least known forests in America and is often underrepre sented in biodiversity databases.13–15 To worsen this situation, human-induced modifications16,17 may elim inate pieces of the Amazon’s biodiversity puzzle before we can use them to understand how ecological com munities are responding. To increase generalization and applicability of biodiversity knowledge,18,19 it is thus crucial to reduce biases in ecological research, particularly in regions projected to face the most pronounced environmental changes. We integrate ecological community metadata of 7,694 sampling sites for multiple or ganism groups in a machine learning model framework to map the research probability across the Brazilian Amazonia, while identifying the region’s vulnerability to environmental change. 15%–18% of the most ne glected areas in ecological research are expected to experience severe climate or land use changes by 2050. This means that unless we take immediate action, we will not be able to establish their current status, much less monitor how it is changing and what is being lostinfo:eu-repo/semantics/publishedVersio

Pervasive gaps in Amazonian ecological research

Biodiversity loss is one of the main challenges of our time,1,2 and attempts to address it require a clear understanding of how ecological communities respond to environmental change across time and space.3,4 While the increasing availability of global databases on ecological communities has advanced our knowledge of biodiversity sensitivity to environmental changes,5,6,7 vast areas of the tropics remain understudied.8,9,10,11 In the American tropics, Amazonia stands out as the world's most diverse rainforest and the primary source of Neotropical biodiversity,12 but it remains among the least known forests in America and is often underrepresented in biodiversity databases.13,14,15 To worsen this situation, human-induced modifications16,17 may eliminate pieces of the Amazon's biodiversity puzzle before we can use them to understand how ecological communities are responding. To increase generalization and applicability of biodiversity knowledge,18,19 it is thus crucial to reduce biases in ecological research, particularly in regions projected to face the most pronounced environmental changes. We integrate ecological community metadata of 7,694 sampling sites for multiple organism groups in a machine learning model framework to map the research probability across the Brazilian Amazonia, while identifying the region's vulnerability to environmental change. 15%–18% of the most neglected areas in ecological research are expected to experience severe climate or land use changes by 2050. This means that unless we take immediate action, we will not be able to establish their current status, much less monitor how it is changing and what is being lost

Pervasive gaps in Amazonian ecological research

Biodiversity loss is one of the main challenges of our time,1,2 and attempts to address it require a clear understanding of how ecological communities respond to environmental change across time and space.3,4 While the increasing availability of global databases on ecological communities has advanced our knowledge of biodiversity sensitivity to environmental changes,5,6,7 vast areas of the tropics remain understudied.8,9,10,11 In the American tropics, Amazonia stands out as the world's most diverse rainforest and the primary source of Neotropical biodiversity,12 but it remains among the least known forests in America and is often underrepresented in biodiversity databases.13,14,15 To worsen this situation, human-induced modifications16,17 may eliminate pieces of the Amazon's biodiversity puzzle before we can use them to understand how ecological communities are responding. To increase generalization and applicability of biodiversity knowledge,18,19 it is thus crucial to reduce biases in ecological research, particularly in regions projected to face the most pronounced environmental changes. We integrate ecological community metadata of 7,694 sampling sites for multiple organism groups in a machine learning model framework to map the research probability across the Brazilian Amazonia, while identifying the region's vulnerability to environmental change. 15%–18% of the most neglected areas in ecological research are expected to experience severe climate or land use changes by 2050. This means that unless we take immediate action, we will not be able to establish their current status, much less monitor how it is changing and what is being lost

As associações de pacientes com doenças raras e as mídias sociais

Submitted by Repositório Arca ([email protected]) on 2020-03-11T15:55:14Z No. of bitstreams: 2 license.txt: 1748 bytes, checksum: 8a4605be74aa9ea9d79846c1fba20a33 (MD5) maria_lima_iff_dout_2018.pdf: 2136552 bytes, checksum: 59c1b9b9d98952292f50a5376eab3971 (MD5)Approved for entry into archive by Maria Arruda ([email protected]) on 2020-03-23T19:54:21Z (GMT) No. of bitstreams: 2 maria_lima_iff_dout_2018.pdf: 2136552 bytes, checksum: 59c1b9b9d98952292f50a5376eab3971 (MD5) license.txt: 1748 bytes, checksum: 8a4605be74aa9ea9d79846c1fba20a33 (MD5)Made available in DSpace on 2020-03-23T19:54:21Z (GMT). No. of bitstreams: 2 maria_lima_iff_dout_2018.pdf: 2136552 bytes, checksum: 59c1b9b9d98952292f50a5376eab3971 (MD5) license.txt: 1748 bytes, checksum: 8a4605be74aa9ea9d79846c1fba20a33 (MD5) Previous issue date: 2018Fundação Oswaldo Cruz. Instituto Nacional de Saúde da Mulher da Criança e do Adolescente Fernandes Figueira. Rio de Janeiro, RJ, Brasil.A Política Nacional de Atenção Integral às Pessoas com Doenças Raras (PNAIPDR), promulgada em 2014, é resultado do trabalho de associações de pacientes com doenças raras que contou com a participação de profissionais de saúde e do Estado. As doenças raras são caracterizadas por serem entidades nosológicas pouco frequentes, porém, representam um contingente populacional considerável. A emergência do termo \2018doenças raras\2019, embora recente no país, tem um uso político desde a sua concepção nos anos 1980 nos Estados Unidos da América. Tentar compreender os motivos pelos quais as associações de pacientes com doenças raras se aproximaram do movimento social em saúde e, o modo como se deu este processo foram questões que nortearam esta pesquisa, especialmente no que tange ao modo como tais associações buscaram engajar seu público, desde os anos que antecederam a promulgação da PNAIPDR até os dias atuais. Para tanto, empregamos o método da netnografia, usando como fontes as páginas das associações de pacientes com doenças raras no Facebook, o que totalizou 102 páginas. Foram avaliadas as mensagens publicadas, desde o início da rede social até o final do ano de 2016, em todas as páginas de associações de pacientes relacionadas às doenças raras na rede social. A análise permitiu identificar as principais atividades das associações de pacientes, que inclui a busca por direitos, em especial, o acesso a tratamentos de alto custo, a troca de conhecimentos e o exercício do papel de expert leigo, a colaboração com pesquisas científicas e a atuação políticas dos grupos no âmbito nacional. Além disso, observamos que a identidade de \2018raros\2019 vem sendo elaborada, ao longo do tempo, na rede social, sendo importante notar que tal identidade tem um papel político, mas também se relaciona à subjetividade dos indivíduos que estão ligados direta ou indiretamente às associações. Por fim, temas parcialmente abordados pelas associações em suas páginas na rede social, a saber, inclusão e genética, são discutidos, ressaltando as possíveis consequências desta parcialidade para o movimento social. As associações de pacientes têm um papel fundamental na elaboração de políticas públicas de saúde, sobretudo às relacionadas às doenças raras, o que em última análise resulta no fortalecimento da democracia. O movimento social, sem dúvida, é plural, não só em seu aspecto constitutivo, mas também nas ações e intenções. Assim, pondera-se sobre os efeitos do ativismo relacionado às doenças raras, se gerarão ganhos sistêmicos substanciais ou se reproduzem modelos antigos.Enacted in 2014, the National Policy of Integral Attention geared at People with Rare Diseases (PNAIPDR) is the result of the work of rare diseases patients\2019 associations in conjunction with health care professionals and the State. Rare diseases are characterized by their low frequencies, nevertheless they represent a large population. The emergence of the term \2018rare disease\2019, even though recent in the country, has been used politically since its conception, in the 1980s in the United States of America. Trying to understand the reasons that motivated rare diseases patients\2019 associations to take part in the social movement in health, and the way this happened were the main issues that orientated this research, particularly in regard to the way those associations seeked to engage their public, since the years preceding the enactment of PNAIPDR to current days. For this purpose, we used netnography as a method. The source were the Facebook pages of patients\2019 associations, in a total of 102 pages. All messages published in those pages, since the launch of the social network until December of 2016, were analyzed. This enabled us to identify patients\2019 associations main activities, which included the pursuit of rights, specially access to high-cost treatment, the network of knowledge exchange, the experience as lay expert, the cooperation in scientific research and politial activities in the country. Furthermore, we have identified that the identity of \2018rare\2019 is being crafted in the long run, in the social network. 000081143 520 L $$aWe highlight that this identity has a political role, but it also relates to individual subjectivity who are directly, or indirectly linked to the associations. Lastly, themes that were partially mentioned in the social network, such as inclusion and genetics are discussed, emphasizing the possible consequences of this bias to the social movement. Patients\2019 associations have a major role in the elaboration of health policies, mainly the ones related to rare diseases, what ultimately results in strengthening of democracy. The social movement is undoubtedly diverse, not only in its constitutive aspects, but also in regard to actions and intentions of each patients\2019 association. Therefore, we consider what will be the effects of activism related to rare diseases, whether they will generate substantial systemic gains or if they reproduce outdated models

Contradições das políticas públicas voltadas para doenças raras: o exemplo do Programa de Tratamento da Osteogênese Imperfeita no SUS

O artigo visa discutir o processo de consolidação de uma política pública, no Brasil, voltada a uma doença rara - a osteogênese imperfeita, cujo tratamento passou a responsabilidade do SUS em 2001 através da Portaria GM/MS2305/2001. O processo de implementação desta terapia vem sendo acompanhado de contradições, sobretudo no que diz respeito às decisões terapêuticas e ao fortalecimento da rede especializada na abordagem desta condição, atitudes claramente percebidas tanto no processo de elaboração quanto no texto da nova Portaria 714/2010

Neurological Phenotypes of Gene Variants: A Report of Four Novel Variants

IRF2BPL gene variants have recently been associated to developmental disability and epilepsy in children and movement disorders in adults. So far, only few cases have been reported; here we present four novel cases identified by exome sequencing, while investigating developmental delay, adult-onset cerebellar ataxia or regression