The LifeCycle Project-EU Child Cohort Network : a federated analysis infrastructure and harmonized data of more than 250,000 children and parents

Early life is an important window of opportunity to improve health across the full lifecycle. An accumulating body of evidence suggests that exposure to adverse stressors during early life leads to developmental adaptations, which subsequently affect disease risk in later life. Also, geographical, socio-economic, and ethnic differences are related to health inequalities from early life onwards. To address these important public health challenges, many European pregnancy and childhood cohorts have been established over the last 30 years. The enormous wealth of data of these cohorts has led to important new biological insights and important impact for health from early life onwards. The impact of these cohorts and their data could be further increased by combining data from different cohorts. Combining data will lead to the possibility of identifying smaller effect estimates, and the opportunity to better identify risk groups and risk factors leading to disease across the lifecycle across countries. Also, it enables research on better causal understanding and modelling of life course health trajectories. The EU Child Cohort Network, established by the Horizon2020-funded LifeCycle Project, brings together nineteen pregnancy and childhood cohorts, together including more than 250,000 children and their parents. A large set of variables has been harmonised and standardized across these cohorts. The harmonized data are kept within each institution and can be accessed by external researchers through a shared federated data analysis platform using the R-based platform DataSHIELD, which takes relevant national and international data regulations into account. The EU Child Cohort Network has an open character. All protocols for data harmonization and setting up the data analysis platform are available online. The EU Child Cohort Network creates great opportunities for researchers to use data from different cohorts, during and beyond the LifeCycle Project duration. It also provides a novel model for collaborative research in large research infrastructures with individual-level data. The LifeCycle Project will translate results from research using the EU Child Cohort Network into recommendations for targeted prevention strategies to improve health trajectories for current and future generations by optimizing their earliest phases of life.Peer reviewe

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead

Court cases involving schools and universities under the Family Educational Rights and Privacy Act of 1974

Educational institutions are required either by law or by necessity to maintain records on students. Prior to the passage of the "Buckley Amendment," more commonly known as the Family Educational Rights and Privacy Act (FERPA), K-12 and postsecondary school officials maintained, used, and shared records according to their own discretion. Although amended several times since the United States Congress passed FERPA in 1974, FERPA retains the Act's two initial overarching purposes: (1) permitting and/or increasing the access by students and parents to their educational records, and (2) protecting their rights to privacy by restricting or limiting the disclosure of their educational records without their consent. As litigation expands in the school environment, school administrators should be aware of the legal and ethical implications involved in the collection, maintenance, and dissemination of student records. As FERPA is the primary federal law governing the management of student records, and extensive case law demonstrates that FERPA allows for a number of opportunities for litigation, school officials must be acutely aware of not only the provisions of FERPA, but also, how FERPA interacts with other law. FERPA has been the subject of much criticism as practitioners, jurists, and scholars have lamented over the Act's ambiguity and sparse legislative history. This qualitative study was rooted in the review of the case law; the idea being that familiarity with the judicial decisions interpreting the scope and application of FERPA would contribute to an increased understanding of FERPA. Through an increased understanding of FERPA, educators can reduce the potential for litigation and the time-consuming labor that often arises out of the management of student records. (Published By University of Alabama Libraries

Post-mortem examination of human fetuses:a comparison of whole-body high-field MRI at 9.4 T with conventional MRI and invasive autopsy

SummaryBackgroundConventional whole-body MRI at 1·5 T does not provide adequate image quality of small fetuses, thus reducing its potential for use as an alternative to invasive autopsy. High-field whole-body MRI at 9·4 T provides good images of small animals. We therefore compared the diagnostic usefulness of high-field MRI with conventional MRI for post-mortem examination of human fetuses.MethodsWe did whole-body MRI at 9·4 T and 1·5 T on 18 fetuses of less than 22 weeks' gestation, using three-dimensional T2-weighted fast-spin echo sequences, before doing invasive autopsy. Images obtained with MRI for each system were compared with the findings of invasive autopsy in a blinded manner. Tissue contrast of 14 different regions was compared on 1·5 T and 9·4 T images that were provided by paediatric radiologists separately and in a random order, and image quality was scored on a four-point scale. The primary endpoint was diagnostic accuracy.FindingsSpatial resolution, tissue contrast, and image quality of all organ systems were much better with high-field MRI than with conventional MRI. All structural abnormalities that were detected with invasive autopsy and internal examination of visceral organs were also detected with high-field MRI, whereas conventional MRI was not diagnostically useful in 14 (78%) cases.InterpretationWhole-body high-field MRI is a feasible option for post-mortem examination of human fetuses, and can provide good tissue characterisation even in small fetuses (5 g). The use of MRI at 9·4 T might be helpful in the development of a minimally invasive perinatal autopsy system.FundingDepartment of Health Policy Research Programme, British Heart Foundation, National Institute of Health Research, Higher Education Funding Council for England, Biotechnology and Biological Sciences Research Council, Engineering and Physical Sciences Research Council, Great Ormond Street Hospital, University College London (UCL) Institute of Child Health, UCL Hospital, and UCL