The Lupus Family Registry and Repository (LFRR) was established with the goal of assembling and distributing materials and data from families with one or more living members diagnosed with SLE, in order to address SLE genetics. In the present article, we describe the problems and solutions of the registry design and biometric data gathering; the protocols implemented to guarantee data quality and protection of participant privacy and consent; and the establishment of a local and international network of collaborators. At the same time, we illustrate how the LFRR has enabled progress in lupus genetics research, answering old scientific questions while laying out new challenges in the elucidation of the biologic mechanisms that underlie disease pathogenesis. Trained staff ascertain SLE cases, unaffected family members and population-based controls, proceeding in compliance with the relevant laws and standards; participant consent and privacy are central to the LFRR's effort. Data, DNA, serum, plasma, peripheral blood and transformed B-cell lines are collected and stored, and subject to strict quality control and safety measures. Coded data and materials derived from the registry are available for approved scientific users. The LFRR has contributed to the discovery of most of the 37 genetic associations now known to contribute to lupus through 104 publications. The LFRR contains 2618 lupus cases from 1954 pedigrees that are being studied by 76 approved users and their collaborators. The registry includes difficult to obtain populations, such as multiplex pedigrees, minority patients and affected males, and constitutes the largest collection of lupus pedigrees in the world. The LFRR is a useful resource for the discovery and characterization of genetic associations in SLE.

Integrity is a critical determinant of the effectiveness of research organizations in terms of producing high quality research and educating the new generation of scientists. A number of responsible conduct of research (RCR) training programs have been developed to address this growing organizational concern. However, in spite of a significant body of research in ethics training, it is still unknown which approach has the highest potential to enhance researchers' integrity. One of the approaches showing some promise in improving researchers' integrity has focused on the development of ethical decision-making skills. The current effort proposes a novel curriculum that focuses on broad metacognitive reasoning strategies researchers use when making sense of day-to-day social and professional practices that have ethical implications for the physical sciences and engineering. This sensemaking training has been implemented in a professional sample of scientists conducting research in electrical engineering, atmospheric and computer sciences at a large multi-cultural, multi-disciplinary, and multi-university research center. A pre-post design was used to assess training effectiveness using scenario-based ethical decision-making measures. The training resulted in enhanced ethical decision-making of researchers in relation to four ethical conduct areas, namely data management, study conduct, professional practices, and business practices. In addition, sensemaking training led to researchers' preference for decisions involving the application of the broad metacognitive reasoning strategies. Individual trainee and training characteristics were used to explain the study findings. Broad implications of the findings for ethics training development, implementation, and evaluation in the sciences are discussed.

In spite of the wide variety of approaches to ethics training it is still debatable which approach has the highest potential to enhance professionals' integrity. The current effort assesses a novel curriculum that focuses on metacognitive reasoning strategies researchers use when making sense of day-to-day professional practices that have ethical implications. The evaluated trainings effectiveness was assessed by examining five key sensemaking processes, such as framing, emotion regulation, forecasting, self-reflection, and information integration that experts and novices apply in ethical decision-making. Mental models of trained and untrained graduate students, as well as faculty, working in the field of physical sciences were compared using a think-aloud protocol 6 months following the ethics training. Evaluation and comparison of the mental models of participants provided further validation evidence for sensemaking training. Specifically, it was found that trained students applied metacognitive reasoning strategies learned during training in their ethical decision-making that resulted in complex mental models focused on the objective assessment of the situation. Mental models of faculty and untrained students were externally-driven with a heavy focus on autobiographical processes. The study shows that sensemaking training has a potential to induce shifts in researchers' mental models by making them more cognitively complex via the use of metacognitive reasoning strategies. Furthermore, field experts may benefit from sensemaking training to improve their ethical decision-making framework in highly complex, novel, and ambiguous situations.

47,XXY is found in excess among men with SLE. Men commonly have SLE that is more severe than that found among women, but the 47,XXY men had less severe SLE than other men.

Although Responsible Conduct of Research (RCR) training is common in the sciences, the effectiveness of RCR training is open to question. Three key factors appear to be particularly important in ensuring the effectiveness of ethics education programs: (1) educational efforts should be tied to day-to-day practices in the field, (2) educational efforts should provide strategies for working through the ethical problems people are likely to encounter in day-to-day practice, and (3) educational efforts should be embedded in a broader program of on-going career development efforts. This article discusses a complex qualitative approach to RCR training development, based on a sensemaking model, which strives to address the afore-mentioned training concerns. Ethnographic observations and prior RCR training served the purpose of collecting information specific to a multi-disciplinary and multi-university research center with the goal of identifying metacognitive reasoning strategies that would facilitate ethical decision-making. The extensive qualitative analyses resulted in the identification of nine metacognitive reasoning strategies on which future RCR training will be developed. The implications of the findings for RCR training in the sciences are discussed.

No abstract

No abstract

No abstract