University of Lisbon
  • Lisbon, Portugal
Recent publications
Remotely sensed data are increasingly used together with National Forest Inventory (NFI) data to improve the spatial precision of forest variable estimates. In this study, we combined data from the 4th Spanish National Forest Inventory (SNFI-4) and from the 2nd nationwide Airborne Laser Scanning (ALS) survey to develop predictive forest inventory variables (total over bark volume (V), basal area (G), and annual increase in total volume (IAVC)) and aboveground biomass (AGB) models for the eight major forest strata in the region of Extremadura that are included in the Spanish Forest Map (SFM). We generated maps at 25 m resolution by applying an area‐based approach (ABA) and 758 sample plots measured with good positional accuracy within the SNFI-4 in Extremadura (Spain). Inventory performance is mainly influenced by spatial scale and vegetation structure. Therefore, in this study, we conducted a comparative analysis of statistical inference methods that can characterize forest inventory variables and AGB uncertainty across multiple spatial scales and types of vegetation structure. Predictions at pixel level were used to produce county, provincial, and regional model-based estimates, which were then compared with design-based estimates at different scales for different types of forest. We developed and tested both methods for forested area (cover, 19,744.15 km²), one province (9126.78 km²), and two counties (1594.42 km² and 2076.76 km², respectively) in Extremadura. The resulting relative standard error (SE) for regional level forest type-specific model-based estimates of V, G, IAVC, and AGB ranged from 3.34%–14.46%, 3.22%–12.50%, 4.46%–16.67%, and 3.63%–12.58%, respectively. The performance of the model-based approach, as assessed by the relative SE, was similar to that of the design-based approach at regional and provincial levels. However, the precision of SNFI model-based estimates was higher than that of estimates based on only the plot observations in small areas (e.g. at county level). The standard errors (SE) for model-based inferences were stable across the different scales, while SNFI design-based errors were higher due to the small sample sizes available for small areas. The findings indicate that SNFI-model based maps could be used directly to estimate forest inventory variables and AGB in the major forest strata included in the Spanish Forest Map, leading to potentially large economic savings. © 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
The paper provides insights into the mental health consequences of the coronavirus disease 2019 (COVID-19) pandemic from the Central, Eastern, Nordic, Southern, and Western subregions of Europe, represented by five member countries of the European Society for Traumatic Stress Studies (ESTSS). On the basis of the existing national research and experiences in these countries, we propose five lessons learned. (1) There is no evidence of a mental health pandemic so far in the countries in focus. No increase in severe mental disorders but some increase in the symptoms of common mental health disorders are observable. More high-quality longitudinal studies are needed to understand the mental health burden of the pandemic. (2) The pandemic affects countries (including the mental health situation) differently, depending on the level of the exposure, management policies, pre-pandemic structural characteristics, and healthcare resources. (3) The pandemic affects people differently: the exposure severity to pandemic-related stressors differs between individuals, as well as individual resources to cope with these stressors. There are winners and losers as well as identifiable at-risk groups that need particular attention. (4) Besides the negative consequences, the pandemic has had a positive impact. The rapidly applied innovations within the system of healthcare responses provide a window of opportunity for positive changes in mental healthcare policies, strategies, and practices. The increased focus on mental health during the pandemic may contribute to the prioritization of mental health issues at policy-making and organizational levels and may reduce stigma. (5) A stress- and trauma-informed response to COVID-19 is required. The European community of psychotraumatologists under the leadership of ESTSS plays an important role in promoting stress- and trauma-informed healthcare and policies of pandemic management. Based on the lessons learned, we propose a stepped-care public mental health model for the prevention of adverse mental health outcomes during pandemics. Highlights: Population mental health is affected differently in the COVID-19 pandemic: there are winners and losers, as well as identifiable at-risk groups that need particular attention.A stress- and trauma-informed public mental health stepped-care model can address pandemic-related mental health burden in a systematic way.
Background Non-Communicable diseases (NCD) are the main contributors to mortality and burden of disease. There is no infrastructure in Europe that could provide health information (HI) on Public Health monitoring and Health Systems Performance (HSP) for research and evidence-informed decision-making. Moreover, there was no EU and European Economic Area Member States (EU/EEA MSs) general consensus, on developing this initiative and guarantee its sustainability. The aim of this study is to analyze the integration of technical and political views made by the Joint Action on Health Information (InfAct; Information for Action) and the results obtained from those activities, in terms of advice and national and institutional support to develop an integrated and sustainable European Distributed Infrastructure on Population Health (DIPoH) for research and evidence-informed policy-making. Methods InfAct established two main boards, the Technical Dialogues (TDs) and the Assembly of Members (AoM), to provide a platform for discussion with EU/EEA MSs to establish a sustainable infrastructure for HI: 1) The TDs were composed by national technical experts (NTE) with the aim to discuss and provide feedback about scientific aspects, feasibility and EU-added value of the infrastructure proposed by InfAct. 2) The AoM gathered country representatives from Ministries of Health and Research at the highest political level, with the aim of providing policy-oriented advice for the future political acceptance, support, implementation, and development of InfAct’s outcomes including DIPoH. The documentation provided for the meetings consisted in Fact-Sheets, where the main results, new methods and proposals were clearly exposed for discussion and assessment; altogether with more extended information of the DIPoH. The documentation was provided to national representatives within one more before each TD and AoM meeting. The Agenda and methodological approaches for each TD and AoM meeting consisted in the presentations of the InfAct outcomes extending the information provided in the Fact-Sheets; followed by a non-structured interaction, exchange of information, discussion and suggestions by the MSs representatives. The outcomes of the non-structured discussions were collected in Minutes of the TD and AoM meetings, and the final version was obtained with the consensus of all participants. Additionally, structured letters of political support were provided to the AoM representatives, for them to consider providing their MS written support for DIPoH. Results NTE, within the TDs, considered that DIPoH was useful for technical mutual learning and cooperation among and within countries; although they considered that the technical feasibility to uptake InfAct deliverables at the national and EU level was complex. The AoM focused on political support, resources, and expected MSs returns. The AoM representatives agreed in the interest of setting up an integrated and sustainable HI infrastructure and they considered DIPoH to be well-articulated and defined; although, some of them, expressed some barriers for providing DIPoH political support. The AoM representatives stated that the AoM is the most suitable way to inform EU MSs/ACs about future advances of DIPoH. Both boards provided valuable feedback to develop this infrastructure. Eleven countries and sixteen institutions supported the proposal, either by letters of political support or by signing the Memorandum of Understandings (MoU) and three countries, additionally, provided expression of financial commitment, for DIPoH to be added to the ESFRI 2021 roadmap. Conclusions TDs and AoM were key forums to develop, advise, advocate and provide support for a sustainable European research infrastructure for Population Health.
Background Clinical endpoints for upcoming therapeutic trials in frontotemporal dementia (FTD) are increasingly urgent. Cognitive composite scores are often used as endpoints but are lacking in genetic FTD. We aimed to create cognitive composite scores for genetic frontotemporal dementia (FTD) as well as recommendations for recruitment and duration in clinical trial design. Methods A standardized neuropsychological test battery covering six cognitive domains was completed by 69 C9orf72 , 41 GRN , and 28 MAPT mutation carriers with CDR® plus NACC-FTLD ≥ 0.5 and 275 controls. Logistic regression was used to identify the combination of tests that distinguished best between each mutation carrier group and controls. The composite scores were calculated from the weighted averages of test scores in the models based on the regression coefficients. Sample size estimates were calculated for individual cognitive tests and composites in a theoretical trial aimed at preventing progression from a prodromal stage (CDR® plus NACC-FTLD 0.5) to a fully symptomatic stage (CDR® plus NACC-FTLD ≥ 1). Time-to-event analysis was performed to determine how quickly mutation carriers progressed from CDR® plus NACC-FTLD = 0.5 to ≥ 1 (and therefore how long a trial would need to be). Results The results from the logistic regression analyses resulted in different composite scores for each mutation carrier group (i.e. C9orf72 , GRN , and MAPT ). The estimated sample size to detect a treatment effect was lower for composite scores than for most individual tests. A Kaplan-Meier curve showed that after 3 years, ~ 50% of individuals had converted from CDR® plus NACC-FTLD 0.5 to ≥ 1, which means that the estimated effect size needs to be halved in sample size calculations as only half of the mutation carriers would be expected to progress from CDR® plus NACC FTLD 0.5 to ≥ 1 without treatment over that time period. Discussion We created gene-specific cognitive composite scores for C9orf72 , GRN , and MAPT mutation carriers, which resulted in substantially lower estimated sample sizes to detect a treatment effect than the individual cognitive tests. The GENFI-Cog composites have potential as cognitive endpoints for upcoming clinical trials. The results from this study provide recommendations for estimating sample size and trial duration.
The accurate simulation of additional interactions at the ATLAS experiment for the analysis of proton–proton collisions delivered by the Large Hadron Collider presents a significant challenge to the computing resources. During the LHC Run 2 (2015–2018), there were up to 70 inelastic interactions per bunch crossing, which need to be accounted for in Monte Carlo (MC) production. In this document, a new method to account for these additional interactions in the simulation chain is described. Instead of sampling the inelastic interactions and adding their energy deposits to a hard-scatter interaction one-by-one, the inelastic interactions are presampled, independent of the hard scatter, and stored as combined events. Consequently, for each hard-scatter interaction, only one such presampled event needs to be added as part of the simulation chain. For the Run 2 simulation chain, with an average of 35 interactions per bunch crossing, this new method provides a substantial reduction in MC production CPU needs of around 20%, while reproducing the properties of the reconstructed quantities relevant for physics analyses with good accuracy.
Background Human performance in classical ballet is a research field of growing interest in the past decades. Technology used to acquire data in human movement sciences has evolved, and is specifically being applied to evaluate ballet movements to better understand dancers’ profiles. We aimed to systematically review sensing technologies that were used to extract data from dancers, in order to improve knowledge regarding the performance of ballet movements through quantification. Methods PubMed, MEDLINE, EMBASE, and Web of Science databases were accessed through 2020. All studies that used motor control tools to evaluate classical ballet movements, and possible comparisons to other types of dance and sports movements were selected. Pertinent data were filled into a customized table, and risk of bias was carefully analyzed. Results Eighty studies were included. The majority were regarding classical ballet and with pre-professional dancers. Forty-four studies (55%) used two or more types of technology to collect data, showing that motion capture technique, force plates, electromyography, and inertial sensors are the most frequent ways to evaluate ballet movements. Discussion Research to evaluate ballet movements varies greatly considering study design and specific intervention characteristics. Combining two or more types of technology may increase data reliability and optimize the characterization of ballet movements. A lack of studies addressing muscle–brain interaction in dancers were observed, and given the potential of novel insights, further studies in this field are warranted. Finally, using quantitative tools opens the perspective of defining what is considered an elite dancer.
The ATLAS experiment at the Large Hadron Collider has a broad physics programme ranging from precision measurements to direct searches for new particles and new interactions, requiring ever larger and ever more accurate datasets of simulated Monte Carlo events. Detector simulation with Geant4 is accurate but requires significant CPU resources. Over the past decade, ATLAS has developed and utilized tools that replace the most CPU-intensive component of the simulation—the calorimeter shower simulation—with faster simulation methods. Here, AtlFast3, the next generation of high-accuracy fast simulation in ATLAS, is introduced. AtlFast3 combines parameterized approaches with machine-learning techniques and is deployed to meet current and future computing challenges, and simulation needs of the ATLAS experiment. With highly accurate performance and significantly improved modelling of substructure within jets, AtlFast3 can simulate large numbers of events for a wide range of physics processes.
Background Congenital Disorders of Glycosylation (CDG) are a complex family of rare metabolic diseases. Robust clinical data collection faces many hurdles, preventing full CDG biological and clinical comprehension. Web-based platforms offer privileged opportunities for biomedical data gathering, and participant recruitment, particularly in rare diseases. The immunology and CDG electronic (e-) questionnaire (ImmunoCDGQ) explores this paradigm, proposing a people-centric framework to advance health research and participant empowerment. Objective The objectives of this study were to: (1) Describe and characterize the ImmunoCDGQ development, engagement, recruitment, participation, and result dissemination strategies; (2) To critically compare this framework with published literature and making recommendations. Methods An international, multistakeholder people-centric approach was initiated to develop and distribute the ImmunoCDGQ, a multi-lingual e-questionnaire able to collect immune-related data directly from patients and family caregivers. An adapted version was produced and distributed among the general “healthy” population (ImmunoHealthyQ), serving as the control group. Literature screening was performed to identify and analyze comparable studies. Results The ImmunoCDGQ attained high participation and inclusion rates (94.6%, 209 out of 221). Comparatively to the control, CDG participants also showed higher and more variable questionnaire completion times as well as increased English version representativeness. Additionally, 20% of the CDG group (42 out of 209) chose not to complete the entire questionnaire in one go. Conditional logic structuring guided participant data provision and accurate data analysis assignment. Multi-channel recruitment created sustained engagement with Facebook emerging as the most followed social media outlet. Still, most included ImmunoCDGQ questionnaires (50.7%, 106 out of 209) were submitted within the first month of the project’s launch. Literature search and analysis showed that most e-questionnaire-based studies in rare diseases are author-built (56.8%, 25 out of 44), simultaneously addressing medical and health-related quality of life (HRQoL) and/or information needs (79.5%, 35 out of 44). Also, over 68% of the studies adopt multi-platform recruitment (30 out of 44) actively supported by patient organizations (52.3%, 23 out of 44). Conclusions The ImmunoCDGQ, its methodology and the CDG Community served as models for health research, hence paving a successful and reproducible road to people-centricity in biomedical research.
Introduction Over the last years, the number of systematic reviews published is steadily increasing due to the global interest in this type of evidence synthesis. However, little is known about the characteristics of this research published in Portuguese medical journals. This study aims to evaluate the publication trends and overall quality of these systematic reviews. Material and methods This was a methodological study. We aimed the most visible Portuguese medical journals indexed in MEDLINE. Systematic reviews were identified through an electronic search (through PUBMED). We included systematic reviews published up to August 2020. Systematic reviews selection and data extraction were done independently by three authors. The overall quality critical appraisal using the A MeaSurement Tool to Assess systematic Reviews (AMSTAR-2) was independently assessed by three authors. Disagreements were solved by consensus. Results Sixty-six systematic reviews published in 5 Portuguese medical journals were included. Most ( n = 53; 80.3%) were systematic reviews without meta-analysis. Up to 2010 there was a steady increase in the number of systematic reviews published, followed by a period of great variability of publication, ranging from 1 to 10 in a given year. According to the systematic reviews’ typology, most have been predominantly conducted to assess the effectiveness/efficacy of health interventions ( n = 27; 40.9%). General and Internal Medicine ( n = 20; 30.3%) was the most addressed field. Most systematic reviews ( n = 46; 69.7%) were rated as being of “critically low-quality”. Conclusions There were consistent flaws in the methodological quality report of the systematic reviews included, particularly in establishing a prior protocol and not assessing the potential impact of the risk of bias on the results. Through the years, the number of systematic reviews published increased, yet their quality is suboptimal. There is a need to improve the reporting of systematic reviews in Portuguese medical journals, which can be achieved by better adherence to quality checklists/tools.
Background Match analysis has evolved exponentially over the past decades in team sports resulting in a significant number of published systematic reviews and meta-analyses. An umbrella review of the available literature is needed to provide an integrated overview of current knowledge and contribute to more robust theoretical explanations of team performance. Methods The Web of Science (all databases), PubMed, Cochrane Library (Cochrane Database of Systematic Reviews), Scopus, and SPORTDiscus databases were searched for relevant publications prior to 19 February 2021. Appraisal of the methodological quality of included articles was undertaken using the tool for Assessing the Methodological Quality of Systematic Reviews (AMSTAR-2). Twenty-four studies were reviewed that met the following criteria: (1) contained relevant data from match analyses in team ball sports; (2) were defined as systematic reviews or/and meta-analyses; and (3) were written in the English language. Results The overall methodological quality of the 24 included reviews, obtained through the AMSTAR-2, revealed very low confidence ratings (Critically Low, n = 12) for the results of most systematic reviews of match analyses in team ball sports. Additionally, the results showed that research is focused mainly on four levels of analysis: (1) dyadic (microlevel); (2) individual (molecular level; predominant); (3) group (mesolevel), and (4) team dynamics (macrolevel). These levels of analysis included tactical, technical, physical, and psychosocial variables. Team performance was contextualized at two levels, with reference to: (1) match context (e.g. match status, match location, match period, quality of opposition) and (2) sociodemographic and environmental constraints (sex, age groups, competitive level, altitude, temperature, pitch surface). Conclusions The evolution of methods for match analysis in team ball sports indicates that: (1) an individual-level performance analysis was predominant; (2) the focus on intermediate levels of analysis, observing performance in dyadic and group interactions, has received less attention from researchers; (3) neglected areas of research include psychosocial aspects of team sports and women’s performance; and (4) analyses of match contexts need greater depth. Registration : The protocol was registered in the International Platform of Registered Systematic Review and Meta-Analysis Protocols with the number 202080067 and the DOI number https://doi.org/10.37766/inplasy2020.8.0067 .
Background In Europe, data on population health is fragmented, difficult to access, project-based and prone to health information inequalities in terms of availability, accessibility and especially in quality between and within countries. This situation is further exacerbated and exposed by the recent COVID-19 pandemic. The Joint Action on Health Information (InfAct) that builds on previous works of the BRIDGE Health project, carried out collaborative action to set up a sustainable infrastructure for health information in the European Union (EU). The aim of this paper is to present InfAct’s proposal for a sustainable research infrastructure, the Distributed Infrastructure on Population Health (DIPoH), which includes the setup of a Health Information Portal on population health to be maintained beyond InfAct’s time span. Methods The strategy for the proposal was based on three components: scientific initiatives and proposals to improve Health Information Systems (HIS), exploration of technical acceptability and feasibility, and finally obtaining high-level political support.. The technical exploration (Technical Dialogues—TD) was assumed by technical experts proposed by the countries, and political guidance was provided by the Assembly of Members (AoM), which gathered representatives from Ministries of Health and Science of EU/EEA countries. The results from the AoM and the TD were integrated in the sustainability plan compiling all the major outputs of InfAct. Results The InfAct sustainability plan was organized in three main sections: a proposal of a new research infrastructure on population health (the DIPoH), new health information tools and innovative proposals for HIS, and a comprehensive capacity building programme. These activities were carried out in InfAct and are being further developed in the Population Health Information Research Infrastructure (PHIRI). PHIRI is a practical rollout of DIPoH facilitating and generating the best available evidence for research on health and wellbeing of populations as impacted by COVID-19. Conclusions The sustainability plan received wide support from Member States and was recognized to have an added value at EU level. Nevertheless, there were several aspects which still need to be considered for the near future such as: (i) a commitment of stable financial and political support by Member States (MSs), (ii) the availability of resources at regional, national and European level to deal with innovations, and (iii) a more direct involvement from EU and international institutions such as the European Centre for Disease Prevention and Control (ECDC), the World Health Organization (WHO) and the Organisation for Economic Cooperation and Development OECD for providing support and sustainable contributions.
Background Sustainable production and consumption are two important issues, which mutually interact. Whereas individuals have little direct influence on the former, they can play a key role on the latter. This paper describes the subject matter of sustainable consumption and outlines its key features. It also describes some international initiatives in this field. Results By means of an international survey, the study explores the emphasis given to sustainable consumption during the second wave of the COVID-19 pandemic, and the degree of preparedness in individuals to engage in the purchase of green and sustainably manufactured products. The main results indicate that the pandemic offered an opportunity to promote sustainable consumption; nevertheless, the pandemic alone cannot be regarded as a ‘game changer’ in this topic. Conclusions Apart from an online survey with responses from 31 countries, which makes it one of the most representative studies on the topic, a logit model was used to analyse the main variables that affect the probability of pro-environmental consumption behaviour because of the COVID-19 pandemic. The paper lists some of the technological and social innovations that may be needed, so as to guide more sustainable consumption patterns in a post-pandemic world.
This work presents an innovative ultra-sensitive biosensor having the Spike protein on carbon-based screen-printed electrodes (SPEs), for monitoring in point-of-care antibodies against SARS-CoV-2, a very important tool for epidemiological monitoring of COVID-19 infection and establishing vaccination schemes. In an innovative and simple approach, a highly conductive support is combined with the direct adsorption of Spike protein to enable an extensive antibody capture. The high conductivity was ensured by using carboxylated carbon nanotubes on the carbon electrode, by means of a simple and quick approach, which also increased the surface area. These were then modified with EDC/NHS chemistry to produce an amine layer and undergo Spike protein adsorption, to generate a stable layer capable of capturing the antibodies against SARS-CoV-2 in serum with great sensitivity. Electrochemical impedance spectroscopy was used to evaluate the analytical performance of this biosensor in serum. It displayed a linear response between 1.0 pg/mL and 10 ng/mL, with a detection limit of ∼0.7 pg/mL. The analysis of human positive sera containing antibody in a wide range of concentrations yielded accurate data, correlating well with the reference method. It also offered the unique ability of discriminating antibody concentrations in sera below 2.3 μg/mL, the lowest value detected by the commercial method. In addition, a proof-of-concept study was performed by labelling anti-IgG antibodies with quantum dots to explore a new electrochemical readout based on the signal generated upon binding to the anti-S protein antibodies recognised on the surface of the biosensor. Overall, the alternative serologic assay presented is a promising tool for assessing protective immunity to SARS-CoV-2 and a potential guide for revaccination.
Background Fluid overload has been linked to poor outcomes in the critically ill in recent years, with multiple studies showing an increase in mortality in the overall intensive care unit population. Although the administration of hypertonic saline has increased in recent years, few publications involving its use in intensive care unit have been published to date. The aim of this systematic review is to compare hypertonic and isotonic saline solutions and assess the current evidence to determine whether hypertonic saline can be used in the intensive care unit to treat critically ill or injured patients. Main body The PRISMA protocol was applied to conduct the search, which generated 622 possible trials. Only four papers were chosen and included in our study after duplicates and studies that did not fulfill our inclusion criteria, and outcomes were removed. The primary outcome was mortality, with the length of time spent in intensive care and in the hospital as secondary outcomes, and patients assessed in the intensive care unit ranged from 3 to 55, according to our revision. There were three to 24 trials in all, and not all of them used mortality or intensive care unit stay as an endpoint. The concentration of HS used in the intervention group ranged from 1.4 to 30%, while not all studies used isotonic saline solution as a control group. Conclusions Despite the limited scientific evidence, there seems to be support for the administration/use of hypertonic saline in the intensive care unit setting, in highly selected circumstance. Although hypertonic saline may have favorable therapeutic effects, no effect on mortality has been demonstrated. Patients suffering from a traumatic brain injury evidence suggests that hypertonic saline can effectively lower intracranial pressure, and there is a new trend supporting the use of hypertonic sodium solutions in these situations. Our updated review shows that studies still have a lot of variability, and that more controlled research are needed.
In transmission power networks and during geomagnetic storms, shield wires can carry induced currents in the same way as phase conductors. Shield wires are not usually considered in the transmission line models used in the study of the impact of geoelectric phenomena in power systems. In this study, the influence of shield wires on GICs in power systems is made clearer. The most simple power system, with one single transmission line connecting two substations and one shield wire, is considered. An analytical expression for the Thévenin equivalent circuit that, in parallel with the substations grounding resistances, produces the same effects on GICs as the complete circuit, is derived. Our model extends the results from previous studies by including the induced voltage along the shield wires. Differences can be relevant in relatively short transmission lines with only some tens of towers, where nevertheless the more simple asymptotic derived expressions may be used. Tests were done using realistic values for the circuit parameters and applied to real transmission lines.
Background Congenital disorders of glycosylation (CDG) are a large family of rare genetic diseases for which therapies are virtually nonexistent. However, CDG therapeutic research has been expanding, thanks to the continuous efforts of the CDG medical/scientific and patient communities. Hence, CDG drug development is a popular research topic. The main aim of this study was to understand current and steer future CDG drug development and approval by collecting and analysing the views and experiences of the CDG community, encompassing professionals and families. An electronic (e-)survey was developed and distributed to achieve this goal. Results A total of 128 respondents (46 CDG professionals and 82 family members), mainly from Europe and the USA, participated in this study. Most professionals (95.0%) were relatively familiar with drug development and approval processes, while CDG families revealed low familiarity levels, with 8.5% admitting to never having heard about drug development. However, both stakeholder groups agreed that patients and families make significant contributions to drug development and approval. Regarding their perceptions of and experiences with specific drug development and approval tools, namely biobanks, disease models, patient registries, natural history studies (NHS) and clinical trials (CT), the CDG community stakeholders described low use and participation, as well as variable familiarity. Additionally, CDG professionals and families shared conflicting views about CT patient engagement and related information sharing. Families reported lower levels of involvement in CT design (25.0% declared ever being involved) and information (60.0% stated having been informed) compared to professionals (60.0% and 85.7%, respectively). These contrasting perceptions were further extended to their insights and experiences with patient-centric research. Finally, the CDG community (67.4% of professionals and 54.0% of families) reported a positive vision of artificial intelligence (AI) as a drug development tool. Nevertheless, despite the high AI awareness among CDG families (76.8%), professionals described limited AI use in their research (23.9%). Conclusions This community-centric study sheds new light on CDG drug development and approval. It identifies educational, communication and research gaps and opportunities for CDG professionals and families that could improve and accelerate CDG therapy development.
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16,674 members
Alexandre Trindade
  • Centre for Interdisciplinary Research in Animal Health
Fernando Martins
  • Departamento de Linguística Geral e Românica
Ben Toth
  • Centro de Filosofia das Ciências (CFC)
Carlos Baleizão
  • Department of Chemical Engeneering
Information
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Alameda da Universidade, 1649-004, Lisbon, Portugal
Head of institution
António Cruz Serra
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http://www.ulisboa.pt/
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