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Comparative studies are missing that explore how socio-cultural and institutional circumstances influence patient comprehension and expectations regarding informed consent for current and future research on their tissue and data. This study compares how breast cancer patients in three European countries (the United Kingdom, Belgium, and Germany) who have consented to participate in tumor banking assess the given consent and the accompanying local contextual factors influencing it. Our survey demonstrates that only 59% of the patients in the British survey, but about 90% in the German and Belgian surveys, correctly recalled tissue and data donation for study purposes. Of those who remembered the study participation status correctly, about 90% had altruistic motives. At the same time, approximately half of the survey participants, or even 70% of the Belgians, expected personal benefit from research participation and information on cancer risk within the family. About half of the interviewees, but only 27% of the British participants, definitively wanted to be asked for re-consent for future research. Of the local contextual factors under study, participants’ appraisals of medical science and data protection were particularly pertinent. More culturally and contextually sensitive comparative research is needed to better understand patient attitudes toward research participation and tissue donation in the context of biobank research.

Most ethical and social research is focused on disease-oriented biobanks, while healthy donors’ motivation toward population biobanking is scarcely explored. We investigated willingness to donate biological samples for research and attitudes toward donation by a mail survey among 4,894 twins enrolled in the population-based Italian Twin Register. We compared responses in different socio-demographic categories and estimated, by the twin design, environmental and genetic components of this attitude. More than 80% of respondents expressed willingness to donate. A prevailing collaborative attitude to donation emerged. Attitude was mainly influenced by individual social and cultural factors. Education was important in shaping motivation and willingness to donate. Future surveys of the general population are desirable to continue investigating attitude toward donation and concerns about biobanking.

Under the auspices of a multi-national European scientific project involving whole genome sequencing, GEUVADIS, we set out to investigate the attitudes of the participating scientists of having their own genome sequenced. The views of such researchers on this subject have not been fully explored before and we utilized questionnaires and discussion groups to elicit their opinions. Many said that it was the first time that they had an opportunity to discuss ethical and social issues about sequencing. The many ongoing multi-national science projects present a good opportunity for social science research involving scientists and would benefit from rigorous research methodology, taking into account any language barriers.

Previous surveys have suggested that elderly Japanese women have the lowest scientific interest and literacy within the Japanese population and among populations across Western countries. Because recent tremendous advances in genome analysis are likely to be incorporated into standard biomedical assessments throughout the world, we conducted surveys to investigate the attitudes toward genetic/genomic research of Japanese women aged between 55 and 65 years. Current surveys indicate that obtaining adequate informed consent from elderly Japanese women is complicated. The limitation is especially relevant to participants’ literacy in genetics and genomic studies. Results of the surveys also indicate that even after the informed consent is obtained, researchers must continue to supply updated study information to the study subjects, which enables them to obtain additional information on the use of their samples and genetic/genomic information. Failure to consider these obligations may lead to a loss of the public’s trust and thus affect research progress on medical genomics.

ObjectivesTo assess to which extent the COVID-19 pandemic affected corneal transplantation by virtue of donor selection algorithms in different European countries.DesignSurvey.Setting110 eye banks in 26 European countries.Participants64 eye banks covering 95% of European corneal transplantation activity.InterventionsA questionnaire listing the number of corneas procured and distributed from February to May 2018–2020 was circulated to eye banks.Main outcome measuresThe primary outcome was the number of corneal procurements. Additional outcomes were national algorithms for donor selection, classified according to their stringency (donors with COVID-19 history, suspected for COVID-19, asymptomatic, PCR testing) and the pandemic severity in each country. We calculated Spearman’s correlation coefficient to determine, two by two, the relationship between the 3-month decline in eye banking activity (procurement), the stringency of donor selection algorithm and the grading of pandemic severity (cases and deaths). A partial correlation was run to determine the relationship between decline and stringency while controlling for pandemic severity.ResultsProcurements decreased by 38%, 68% and 41%, respectively, in March, April and May 2020 compared with the mean of the previous 2 years, while grafts decreased, respectively, by 28%, 68% and 56% corresponding to 3866 untreated patients in 3 months. Significant disparities between countries and the decrease in activity correlated with stringency in donor selection independent of pandemic severity.ConclusionsOur data demonstrate significant differences between countries regarding donor screening algorithms based on precautionary principles and, consequently, a decrease in the donor pool, already constrained by a long list of contraindications. Fundamental studies are needed to determine the risk of SARS-CoV-2 transmission by corneal transplantation and guide evidence-based recommendations for donor selection to justify their substantial medical and economic impact.

Background The transplantation of human organs, and some human tissues, is often the only life-saving therapy available for serious and life-threatening congenital, inherited or acquired diseases. However, it is associated with a risk of transmission of communicable diseases from donor to recipient. It is imperative to understand the characteristics of the donor population (including both potential and actual donors) to inform policies that protect recipient safety. The Tissue and Organ Donor Epidemiology Study (TODES) was a pilot project designed to identify and collect standardized information on deceased persons referred for organ, tissue and/or eye donation, and to estimate (to the extent possible) infectious disease prevalence and incidence of human immunodeficiency virus (HIV), hepatitis B virus (HBV) and hepatitis C virus (HCV) in this population. TODES is summarized here to shed light on addressable limitations on accessing data needed for transplant recipient safety. Limitations, future research needs and potential pathways to solve the remaining data needs are explored. Methods Retrospective data for all deceased donors during a 5-year period from 2009 to 2013 were obtained from participating organ procurement organizations (OPOs), tissue establishments and eye banks. These decedent data were used to ascertain whether the available real-world data (RWD) could be used to inform donor screening and testing policy. Results The TODES database contains 291 848 records received from nine OPOs and 42 451 records received from four eye banks. Data were analysed from deceased donors with at least one organ, tissue or ocular tissue recovered with the intent to transplant. Results for potential donors were not analysed. Available RWD at the time of the TODES study were not fit-for-purpose to help characterize the organ, tissue and eye donor populations and/or to inform donor screening policy. Conclusions Recent advances in electronic data collection systems make it more realistic to now collect fit-for-purpose RWD that address the research needed to improve transplant safety.

The Brain Donation Program at Sun Health Research Institute has been in continual operation since 1987, with over 1000 brains banked. The population studied primarily resides in the retirement communities of northwest metropolitan Phoenix, Arizona. The Institute is affiliated with Sun Health, a nonprofit community-owned and operated health care provider. Subjects are enrolled prospectively to allow standardized clinical assessments during life. Funding comes primarily from competitive grants. The Program has made short postmortem brain retrieval a priority, with a 2.75-h median postmortem interval for the entire collection. This maximizes the utility of the resource for molecular studies; frozen tissue from approximately 82% of all cases is suitable for RNA studies. Studies performed in-house have shown that, even with very short postmortem intervals, increasing delays in brain retrieval adversely affect RNA integrity and that cerebrospinal fluid pH increases with postmortem interval but does not predict tissue viability.

PurposeThe global survey of eye banking and corneal transplantation reveals differences in eye banking trajectories in various countries. There is a need to encourage and lay down foundations of successful eye banking practices in many nations across the world map. The study evaluates demographics, trends in donor cornea retrieval, utilization and eye banking practices in over 30 years at a single eye bank in India.MethodsA longitudinal descriptive analysis of eye banking practices from 1989 to 2018 at Ramayamma International Eye Bank, Hyderabad, India, was performed. Data on eye donations, practice patterns and various types of keratoplasty were collected. Data were analysed focusing on practices and historical development of the eye bank. ResultsOver the years, the eye bank has made use of several advances in its practice patterns and evolved to a stage of self-sustainability. With the fulfilment of internal demand for corneal transplantation, 50% of retrieved corneas could be distributed for community needs outside the institute. Number of transplants increased from 20 in 1987 to 4738 in 2018. Total number of transplants touched 27,746 in 2018 which might be the highest numbers for a single centre anywhere in the world.ConclusionsThe study reveals a dynamic development of the eye bank over the last 30 years and emphasizes the importance of an active quality management in coping with the challenges of modern eye banking. The increasing trend of cornea collection and transplantation is a reflection of the needs and efforts towards treating and eliminating corneal blindness.

Background The AD Knowledge Portal (https://adknowledgeportal.org) is a National Institute on Aging (NIA) sponsored resource for Alzheimer's Disease data and other research tools. Method The AD Portal allows researchers to share human and non‐human data with appropriate attribution for reuse, and in compliance with necessary data governance and ethical guardrails. This is accomplished through the use of the secure Synapse data sharing platform and a user‐friendly data portal website. Results The AD Portal hosts resources from 14 NIH‐funded research programs and 97 grants related to dementia and aging, including ∼800TB of data from over 11,000 individuals. This diverse collection includes next‐generation sequencing, imaging, and behavioral data from brain banks, longitudinal cohorts, cell lines, and animal model systems. A decade after its inception, the Portal remains an important resource for contemporary AD research, as demonstrated by the ∼290TB of multimodal single‐cell omics data currently available. Users can also explore experimental mouse and marmoset models, publications, and summarized evidence for putative AD drug targets via multiple integrated results explorers. Portal data can be combined with external research datasets via interoperability with cloud‐based analysis platforms including CAVATICA and Terra (in development). These integrations provide users with an alternative to direct download and enable data reuse. In total, 12.57 PB of data from the Portal has been downloaded by more than 6,000 unique users since January 2022. Average downloads (TB/month) increased by 79% year‐over‐year between 2022 and 2023 and doubled between 2023 and 2024. Expansion of available resources and increases in both volume and number of data downloads correlates with a similar increase in data reuse. Portal data has been referenced in over one thousand publications since 2019, with more than half of those publications representing secondary data reuse. Conclusion The AD Knowledge Portal continues to serve the research community by sharing rich, high‐throughput data and other resources that enable novel discoveries in the field of Alzheimer's disease. Upcoming features include interoperability with AD Workbench, NACC, NIAGADS, and LONI and valuable new data types, including spatial transcriptomics and longitudinal molecular and behavioral data from mouse and marmoset models of AD.

Background To identify disease‐modifying therapies and drug targets for Alzheimer's disease (AD), it is necessary to assess the impact of cellular and molecular dysfunction on disease aetiology. The AD Knowledge Portal (Portal) (https://adknowledgeportal.org), Exceptional Longevity Portal (ELITE) and Agora (https://agora.adknowledgeportal.org) are community‐driven resources that support researchers as they: 1) identify new molecular hypotheses and mechanisms, 2) evaluate hypotheses via independent experimental assessments, and 3) prioritise new molecular mechanisms for therapeutic development. Method The Portals and Agora are free, open‐access tools built to maximise therapeutic discovery by enabling researchers to re‐use data from 41,000+ biospecimens collected from 12,000+ individuals across four species and browse or access analytical results related to putative drug targets. The Portals and Agora empower the research community with a trusted repository of data, computational and experimental tools and potential gene targets to test target hypotheses and therapeutics. The portals are also integrated with external Trusted Research Environments (TREs) like CAVATICA and integrate the portals with Terra and AD Workbench. Result The Portal supports research outputs from 55 grants (including the Accelerating Medicines Partnership‐Alzheimer's Disease), each generating data and computational/experimental tools related to dementia and ageing. Utilizing samples from brain banks, longitudinal cohorts, and model systems, available data spans 55+ assays, including genomics, metabolomics, imaging, cognitive assessments, and more. Model systems in the Portal include iPSC‐derived cell types and organoids and novel Late‐Onset AD mouse models based on gene targets identified from human data. These mouse models are available with no limitation on use. The Portal also features a cloud‐based analytical workspace providing access to preconfigured computational resources to process, integrate, and analyse data. A subset of the processed data is also presented in Agora, a visual results explorer that compiles evidence of genes' association with AD. Agora hosts a list of nominated targets and presents the results of omics analyses generated from Portal data. It also includes a catalogue of details and results from targeted validation studies. Conclusion The AD Knowledge Portal, the ELITE Portal and Agora offer the research community an accessible, rich data source, tools, and results.