Much can be at stake depending on the choice of words used to describe citizen science, because terminology impacts how knowledge is developed. Citizen science is a quickly evolving field that is mobilizing people's involvement in information development, social action and justice, and large-scale information gathering. Currently, a wide variety of terms and expressions are being used to refer to the concept of 'citizen science' and its practitioners. Here, we explore these terms to help provide guidance for the future growth of this field. We do this by reviewing the theoretical, historical, geopolitical, and disciplinary context of citizen science terminology; discussing what citizen science is and reviewing related terms; and providing a collection of potential terms and definitions for 'citizen science' and people participating in citizen science projects. This collection of terms was generated primarily from the broad knowledge base and on-the-ground experience of the authors, by recognizing the potential issues associated with various terms. While our examples may not be systematic or exhaustive, they are intended to be suggestive and invitational of future consideration. In our collective experience with citizen science projects, no single term is appropriate for all contexts. In a given citizen science project, we suggest that terms should be chosen carefully and their usage explained; direct communication with participants about how terminology affects them and what they would prefer to be called also should occur. We further recommend that a more systematic study of terminology trends in citizen science be conducted.
Soon after publication the authors were made aware of an error within Table 3 of the original publication. The example given as the 'Scientist' term 'Citizen scientist, Scientist-citizen, public scientist, community scientist' previously read: "Citizen scientists investigated anecdotal evidence to construct hypotheses regarding developmental disorders that members of the public claimed were triggered by a MMR vaccine." This should have read: "Citizen scientists investigated anecdotal evidence to construct hypotheses regarding developmental disorders that members of the public claimed were triggered by chemical pollution." The corrected Table 3 is presented here.
Background: Therapeutic plasma exchange has been tried as a treatment approach for systemic sclerosis since 1978 based on the rationale that some circulating factor is involved in disease pathogenesis, for example, autoantibodies or immune complexes, and that removing the potential pathogenic factors could lead to symptom improvement. Based on our impression that clinicians and researchers are largely unaware that a large volume of research has been published about the use of therapeutic plasma exchange as a treatment for systemic sclerosis, we conducted a comprehensive review and analysis of all published research on this topic. Results: We identified 46 relevant articles that met our search criteria, involving a total of 572 patients. Of these, 19 were case studies; the rest ranged from small observational studies to prospective randomized clinical trials. In all but two studies, most patients receiving therapeutic plasma exchange showed improvements in both clinical symptoms and laboratory markers, including significant improvement in Raynaud's symptoms and healing of digital ulceration after three to four weekly treatments. The beneficial effects from even a short course of therapeutic plasma exchange treatments were long-lasting, typically 6 months or longer. Therapeutic plasma exchange was very well tolerated. Adverse events were rare and, in almost all cases, mild and transitory. Conclusion: These results suggest that long-term therapeutic plasma exchange may offer a low-risk way to control and in some cases reverse systemic sclerosis symptoms. The mechanism for the clinical improvements seen from therapeutic plasma exchange in systemic sclerosis patients is unclear. Therefore, additional studies of therapeutic plasma exchange effects in systemic sclerosis appear to be highly desirable.
While a number of studies have shown short-term beneficial effects of therapeutic plasma exchange (TPE) for treating systemic scleroderma (SSc), there have been no reports on the very long-term usage of TPE as the sole systemic treatment intervention. We report the case of a male patient, originally diagnosed with limited systemic scleroderma (lcSSc) in early 1990, who has been undergoing regular plasmapheresis treatments for more than 22 years, beginning in late 1993. Prior to commencing treatment, the patient exhibited symptoms including severe gastro esophageal reflux disease (GERD) with esophagitis, frequent Raynaud's attacks, reduced lung function, and chronic chilling. With the exception of mild residual Raynaud's, all of the patient's symptoms reversed after three years of regular TPE treatments and he remains in complete remission. While the typical explanation for the therapeutic benefits seen with TPE focuses on temporary reduction of circulating antibodies or other pathogenic factors, we propose instead an explanation based on abnormal blood rheology as a novel disease pathogenesis model for SSc.
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