Diogo Almeida

Patient registry data are increasingly used to generate real-world evidence (RWE) for medicines decision-making. This study aimed to identify stakeholders’ views on registries’ ethics practices and to explore potential differences across stakeholder groups. European regulators, Health Technology Assessors (HTA), payers, patients, academia, industry, and healthcare professionals (HCPs) were invited to complete an online survey (Dec 2024 – Jan 2025). It included questions regarding the importance of information on six ethics aspects of registries (5-point Likert scales), acceptability of industry funding for registries (visual analogue scale: 0-100%), and preferences on informed consent (opt-in versus opt-out), data identifiability (anonymous collection/processing; identifiable collection/pseudonymized processing; identifiable collection/processing) and data sharing (federated analyses; transfer of anonymous data; transfer of pseudonymous data; open access anonymous data). Results are reported as frequencies, means (M), and 95% confidence intervals (CI). Stakeholder group differences were tested using Fisher’s exact, Kruskal-Wallis, and pairwise Dunn’s tests. There were 370 participants (129 regulators, 30 HTA/payers, 44 industry representatives, 39 patients, 128 academics/HCPs/others) from 31 countries, 56% were women, and on average 48 years old. Of the six ethics aspects, a registry’s use-and-access policy was considered most important (M: 4.2; 95% CI: 4.1-4.3) and information on funding sources least important (M: 3.9; 95% CI: 3.8-4.0). Among the stakeholder groups, industry representatives considered the highest proportion of registry funding from the pharmaceutical industry acceptable (65%), while HTA/payers provided the lowest proportion (41%). Participants preferred patient opt-out over opt-in consent for data collection and processing by registries (51%) and for data processing by external parties (61%). Compared to all other stakeholder groups, patients more often preferred opt-in consent for both types of data processing (76% and 73%, respectively). Collecting identifiable data and processing pseudonymized data was most preferred overall (65%), while regulators and patients more often favored anonymization than other stakeholders (respectively 34% and 35% versus ≤18%). Overall, anonymization was preferred for data sharing with external parties (34%). Participants generally viewed information on patient registries’ ethics aspects as important. There was a preference for pseudonymization of data used by registries and anonymization of data shared with external parties. Across stakeholder groups, preferences diverged most notably regarding industry funding and consent models. These differences will have to be addressed to work towards a multi-stakeholder consensus on patient registries’ best practices.

Previous work on the comprehension of agreement has shown that incorrectly inflected verbs do not trigger responses typically seen with fully ungrammatical verbs when the preceding sentential context furnishes a possibly matching distractor noun (i.e., agreement attraction). We report eight studies, three being direct replications, designed to assess the degree of similarity of these errors in the comprehension of subject-verb agreement along the dimensions of grammatical gender and number in Modern Standard Arabic. A meta-analysis of the results demonstrate the presence of agreement attraction effects in reading comprehension for gender and number on verbs. Moreover, the meta-analysis demonstrates that these two features do not behave identically: gender effects are larger and occur later relative to number attraction effects. These results challenge models of agreement that predict agreement features to be equipotent and show that real-time models of agreement require modifications in the form of cue-weighting in order to account for these differential results.

In the processing of subject-verb agreement, non-subject plural nouns following a singular subject sometimes “attract” the agreement with the verb, despite not being grammatically licensed to do so. This phenomenon generates agreement errors in production and an increased tendency to fail to notice such errors in comprehension, thereby providing a window into the representation of grammatical number in working memory during sentence processing. Research in this topic, however, is primarily done in related languages with similar agreement systems. In order to increase the cross-linguistic coverage of the processing of agreement, we conducted a self-paced reading study in Modern Standard Arabic. We report robust agreement attraction errors in relative clauses, a configuration not particularly conducive to the generation of such errors for all possible lexicalizations. In particular, we examined the speed with which readers retrieve a subject controller for both grammatical and ungrammatical agreeing verbs in sentences where verbs are preceded by two NPs, one of which is a local non-subject NP that can act as a distractor for the successful resolution of subject-verb agreement. Our results suggest that the frequency of errors is modulated by the kind of plural formation strategy used on the attractor noun: nouns which form plurals by suffixation condition high rates of attraction, whereas nouns which form their plurals by internal vowel change (ablaut) generate lower rates of errors and reading-time attraction effects of smaller magnitudes. Furthermore, we show some evidence that these agreement attraction effects are mostly contained in the right tail of reaction time distributions. We also present modeling data in the ACT-R framework which supports a view of these ablauting patterns wherein they are differentially specified for number and evaluate the consequences of possible representations for theories of grammar and parsing.