The International LAM Registry: A Component of an Innovative Web-Based Clinician, Researcher, and Patient-Driven Rare Disease Research Platform

Background: A relative friability to capture a sufficiently large patient population in any one geographic location has traditionally limited research into rare diseases. Methods and Results: Clinicians interested in the rare disease lymphangioleiomyomatosis (LAM) have worked with the LAM Treatment Alliance, the MIT Media Lab, and Clozure Associates to cooperate in the design of a state-of-the-art data coordination platform that can be used for clinical trials and other research focused on the global LAM patient population. This platform is a component of a set of web-based resources, including a patient self-report data portal, aimed at accelerating research in rare diseases in a rigorous fashion. Conclusions: Collaboration between clinicians, researchers, advocacy groups, and patients can create essential community resource infrastructure to accelerate rare disease research. The International LAM Registry is an example of such an effort.

Analyzing the researcher's work in generating data: The case of complaints

This article investigates the researcher's work in the coproduction (or not) of complaint sequences in research interviews. Using a conversation analytic approach, we show how the interviewer's management of complaint sequences in a research setting is consequential for subsequent talk and thus directly affects the data generated. In the examples shown here, researchers sharing cocategorial incumbency with respondents may well provide spaces for research participants to formulate complaints. This article examines sequences of talk surrounding complaints to show how researchers generate complaints (or not) and handle unsafe complaints. Researchers are able to provoke specific types of accounts from respondents, whereas their respondents may actively resist the researchers' direction. For researchers using the interview as a method of data generation, examination of complaint sequences and how these appear in interview data provides insight into how interview talk is coproduced and managed within a socially situated setting.

The organization of research corporations and researcher ability

This paper analyzes the formation of Research Corporations as an alternative governance structure for performing R&D compared to pursuing in-house R&D projects. Research Corporations are privatefor-profit research centers that bring together several firms with similar research goals. In a Research Corporation formal authority over the choice of projects is jointly exercised by the top management of the member firms. A private for-profit organization cannot commit not to interfere with the project choice of the researchers. However, increasing the number of member firms of the Research Corporation reduces the incentive of member firms to meddle with the research projects of researchers because exercising formal authority over the choice of research projects is a public good. The Research Corporation thus offers researchers greater autonomy than a single firm pursuing an identical research program in its in-house R&D department. This attracts higher ability researchers to the Research Corporation compared to the internal R&D department. The paper uses the theoretical model to analyze the organization of the Microelectronics and Computer Technology Corporation (MCC). The facts of this case confirm the existence of a tension between control over the choice of research projects and the ability of researchers that the organization is able to attract or hold onto.

The International LAM Registry: a component of an innovative web-based clinician, researcher, and patient-driven rare disease research platform.

BACKGROUND: A relative inability to capture a sufficiently large patient population in any one geographic location has traditionally limited research into rare diseases. METHODS AND RESULTS: Clinicians interested in the rare disease lymphangioleiomyomatosis (LAM) have worked with the LAM Treatment Alliance, the MIT Media Lab, and Clozure Associates to cooperate in the design of a state-of-the-art data coordination platform that can be used for clinical trials and other research focused on the global LAM patient population. This platform is a component of a set of web-based resources, including a patient self-report data portal, aimed at accelerating research in rare diseases in a rigorous fashion. CONCLUSIONS: Collaboration between clinicians, researchers, advocacy groups, and patients can create essential community resource infrastructure to accelerate rare disease research. The International LAM Registry is an example of such an effort. 82.

Toward a Cultural Health Psychology : taking researcher's and participants' activity into consideration

Several authors in critical health psychology have underlined the need to develop models of psychological life within qualitative research that are not limited to mere descriptions of health or illness. This communication presents methodological basis in order to overcome such descriptive level by proposing a socio-cultural approach. First, we analyze the dominant tendency in psychology consisting on defining the constructivist paradigm and qualitative research as impressionist, vague and subjective, that is, "non scientific". We claim that qualitative research may be objective, clear and precise while succeeding to consider psychological processes within their socio-cultural context. We make "indirect methods" a major focus, as able to capture psychological processes at stake in health and illness by interpreting their "traces". Moreover, we illustrate a variety of methods used in psychology to study the structuring role of culture in this process. We conclude by discussing the possibility to build complex psychological concepts regardless immediate experience.

Digital Humanities For Everyone’s Benefit?: interplay in social media with the great audience, high-esteemed researcher and self-conscious library

The National Library of Finland realizes the Digitization Project of Kindred Languages in 2012–15. The project is financially supported by the Kone Foundation. During this project the National Library of Finland has digitized and made available approximately 1200 monograph and more than 100 newspaper titles in several Uralic languages. The materials are available to both researchers and citizens in the National Library’s Fenno-Ugrica collection. The project will produce digitized materials in the Uralic languages as well as their development tools to support linguistic research and citizen science. The resulting materials will constitute the largest resource for the Uralic languages in the world. Through this project, researchers will gain access to corpora which they have not been able to study before and to which all users will have open access regardless of their place of residence. In my presentation, I will discuss 1) how we utilized the social media (Facebook, Twitter, VKontakte etc) to gain audience for our collection and 2) how the needs of researchers and laymen were met in crowdsourcing.

Shop-floor narratives : how six workers and a researcher describe learning activities

I am a part-time graduate student who works in industry. This study is my narrative about how six workers and I describe shop-floor learning activities, that is learning activities that occur where work is done, outside a classroom. Because this study is narrative inquiry, you wilileam about me, the narrator, more than you would in a more conventional study. This is a common approach in narrative inquiry and it is important because my intentions shape the way that I tell these six workers' stories. I developed a typology of learning activities by synthesizing various theoretical frameworks. This typology categorizes shop-floor learning activities into five types: onthe- job training, participative learning, educational advertising, incidental learning, and self-directed learning. Although learning can occur in each of these activities in isolation, it is often comprised of a mixture of these activities. The literature review contains a number of cases that have been developed from situations described in the literature. These cases are here to make the similarities and differences between the types of learning activities that they represent more understandable to the reader and to ground the typology in practice as well as in theory. The findings are presented as reader's theatre, a dramatic presentation of these workers' narratives. The workers tell us that learning involves "being shown," and if this is not done properly they "learn the hard way." I found that many of their best case lean1ing activities involved on-the-job training, participative learning, incidentalleaming, and self-directed learning. Worst case examples were typically lacking in properly designed and delivered participative learning activities and to a lesser degree lacking carefully planned and delivered on-the-job training activities. Included are two reflective chapters that describe two cases: Learning "Engels" (English), and Learning to Write. In these chapters you will read about how I came to see that my own shop-floor learning-learning to write this thesis-could be enhanced through participative learning activities. I came to see my thesis supervisor as not only my instructor who directed and judged my learning activities, but also as a more experienced researcher who was there to participate in this process with me and to help me begin to enter the research community. Shop-floor learning involves learners and educators participating in multistranded learning activities, which require an organizational factor of careful planning and delivery. As with learning activities, which can be multi-stranded, so too, there can be multiple orientations to learning on the shop floor. In our stories, you will see that these six workers and I didn't exhibit just one orientation to learning in our stories. Our stories demonstrate that we could be behaviorist and cognitivist and humanist and social learners and constructivist in our orientation to learning. Our stories show that learning is complex and involves multiple strands, orientations, and factors. Our stories show that learning narratives capture the essence of learning-the learners, the educators, the learning activities, the organizational factors, and the learning orientations. Learning narratives can help learners and educators make sense of shop-floor learning.

e-Research Methods Theme 2 Getting Started as a Researcher

In this theme you will work through a series of texts and activities and reflect on your view of research as well as the skills you are developing. Most activities are supported by textual or audio material and are there to stimulate your thinking in a given area. Through this theme you will have a broad understanding of what is expected of you, the skills you will be developing, the different approaches to research and the importance of developing a clear and mutually understood relationship with your supervisor.

Supporting the Teaching Researcher. 'Respaldo al investigador que es también docente'.

Monográfico con el título: 'Competencias docentes en la Educación Superior'. Resumen basado en el de la publicación