Texas Instruments (Netherlands)

Using data from the second wave of the Netherlands Kinship Panel Study (NKPS) for 3069 female and 2096 male respondents, we studied differences in norms of universal and of personal familial responsibility between childless individuals and parents. Differences depend on the type of norm studied. Childless individuals, and in most cases only those who opt voluntarily for a childless life, express weaker norms of universal familial responsibility in comparison with parents. Women’s norms of personal familial responsibility do not vary by parental status. Men appear to need the presence of children to activate feelings of personal responsibility for family members. Differences between childless individuals and parents are attributable to selection rather than to adaptation. The theoretical and social implications of our findings are discussed.

Abstract Four outbreaks of leukoencephalomyelopathy in colonies of SPF cats on a long‐term diet of irradiated dry cat food were observed in the Netherlands between 1989 and 2001. As a primary defect in myelin formation was suspected to be the cause of the disease and myelin consists mainly of lipids and their fatty acids, we investigated the fatty acid composition of the white matter of the spinal cord of affected and control cats and of irradiated and non‐irradiated food. The irradiated food had low levels of alpha‐linolenic acid compared to linoleic acid as well as a high total omega‐6:omega‐3 ratio of 7:1 in the irradiated and of 2:1 in the non‐irradiated food. The white matter of the spinal cord showed low levels of linoleic acid and absence of alpha‐linolenic acid in affected cats as well as absence of lignoceric and nervonic acid in both affected and control cats. These abnormalities in fatty acid composition of the white matter of the spinal cord may reflect an increased need for alpha‐linolenic acid as a substrate for longer chain omega‐3 fatty acids to compose myelin and thus indicate a particular species sensitivity to dietary deficiency in omega‐3 polyunsaturated fatty acids, particularly alpha‐linolenic acid in cats. Our findings indicate that abnormalities in fatty acid metabolism in myelin play an essential role in the pathogenesis of this acquired form of leukoencephalomyelopathy in cats.

Public involvement (PI) in research is increasingly requested, yet systematic evaluation is limited. This study evaluates whether a panel advising an Alzheimer’s Disease and Related Dementia’s (ADRD) Cohort Study fulfills PI quality criteria and leads to perceived Cohort Study improvement and describe lessons learned. A panel of 49 members of the public advised the Cohort Study through questionnaires and meetings. Panelists and Cohort Study researchers completed questionnaires based on PI quality criteria as formulated in the Patient Engagement Quality Guidance Framework, specifically developed to capture insights on the quality of PI. Findings were supplemented by reflections of the panel organizers and three panelists. Additionally, we outlined the panel’s aim and design to provide a practical example of PI in ADRD research. Of 49 panelists, 43 consented for use of their data for evaluation purposes (72% female (31/43), mean age 62 years, 82% (35/43) in good health). Response rates to the evaluation questionnaire were 37% for panelists (16/43) and 67% for researchers (4/6). Most panelists reported that the panel’s purpose (95%; 15/16) and communication were (very) clear (94%; 15/16), certainly adequate resources to provide input (75%; 12/16), and sufficient transparency (87%; 14/16). All felt respected and found it easy to participate in online panel questionnaires. However, 56% (9/16) found attending in-person meetings challenging due to time or travel. Researchers reported positive impact on Cohort Study quality, e.g., improved participant information letter, yet also highlighted the required time and effort to involve a panel and suggested to improve management of panelists’ expectations. Among the lessons learned are the value of offering multiple ways to participate, and the need for more communication between all parties involved. Engaging a PI panel was perceived to improve an ADRD Cohort Study and fulfilled most quality criteria from the Patient Engagement Quality Guidance Framework. However, results must be interpreted with caution due to potential consent bias. Dementia is a growing health concern worldwide. Today, around 50 million people are living with the condition, and this number is expected to rise to 152 million by 2050. At the moment, there are only limited treatment options. In this study, researchers worked with 49 members of the public, known as a panel, to support a long-term dementia research project. The panel gave advice through online surveys and in-person meetings. Afterwards both the researchers from the long-term dementia research project and panel members reflected on how the process worked. Most panel members felt that the purpose of the panel was clear, that communication was handled well, and that they were treated with respect. Panel members said it was easy to take part in online meetings and surveys, although a few said attending in-person meetings was more difficult. Researchers thought that the panel was very useful, for example, by helping to make written information for study participants easier to understand. However, they also pointed out that involving the public takes time and effort, and that it is important to set realistic expectations. The lessons learned suggest that offering different ways for people to take part, along with clear and open communication towards researchers and panel members, makes these panels more successful. Overall, the panel improved the dementia research study, though the conclusions should be interpreted carefully, as not every panel member gave feedback.

BACKGROUND: Alzheimer's disease (AD) takes 20 to 30 years to develop, yet hardly any existing data collection or registry takes into account the entire disease trajectory. Moreover, prediction models are often based on selected research populations and their outcomes may not be most relevant to patients' daily lives. To address these gaps we set up a Dutch national data collection infrastructure, the ABOARD Cohort, to (i) study the AD disease trajectory using patient reported outcome measures (PROMs) and medical data, (ii) link to available registry data, and (iii) serve as central platform to initiate additional studies and roll-out healthcare innovations. Here, we describe the design of the project and characteristics of the first 10,275 participants. METHOD: The ABOARD Cohort is an ongoing, participant-centered data-collection, focused on PROMs, a minimal case report form (CRF) with relevant medical data, and linkage to existing data sources (Figure 1). Eligible participants with or at-risk of AD or other types of dementia and their study partners are recruited directly-to-participant. Informed consent and annual collection of PROMs are fully online. Relevant stakeholders are involved in decisions on project development through a panel of participants and on data usage through a data access committee. RESULTS: The ABOARD Cohort has been operational since January 2023. As of October 2024, 10,275 participants (mean age 66.1 ± 9.2 years, 70% female) and 1,383 partners signed up, and received an invitation to fill in online questionnaires and complete a digital cognitive test (table 1). Over 90% of those participants also gave consent to link their data to existing registries. Participants who had consulted a doctor for memory problems (N = 1,128), reported worse outcomes on PROMs assessing mental health and cognition, quality of life and lifestyle, compared to those who had not. CONCLUSION: The ABOARD Cohort has been set up as a national infrastructure to study AD disease trajectories, linking data-sources, with the participant at the steering wheel. This infrastructure has the potential to serve as a future registry to advance AD research on a national level, and provide Real World Data to evaluate novel interventions and therapies.

Abstract Joint interpretation of bulk and shear wave speeds constrains the chemistry of the deep mantle. At all depths the diversity of wave speeds cannot be explained by an isochemical mantle. Between 1000 and 2500 km depth, hypothetical mantle models containing an electronic spin crossover in (Mg,Fe)O provide a significantly better fit to the wave-speed distributions, as well as more realistic temperatures and silica contents, than models without a spin crossover. Below 2500 km, wave speed distributions are explained by an enrichment in silica towards the core-mantle boundary. This silica enrichment may represent the fractionated remains of an ancient basal magma ocean.