Saving Social Media Data: Understanding Data Management Practices Among Social Media Researchers and their Implications for Archives

Social media data offer researchers new opportunities to leverage those data for their work in broad areas such as public opinion, digital culture, labor trends, and public health. Success of efforts to save social media data for reuse by researchers will depend on aligning data management and archiving practices with evolving norms around capture, use, sharing, and security of datasets containing this new type of data. This paper presents an initial foray into understanding how established practices for managing and preserving data should adapt to new demands from social media data, researchers who use and reuse social media data, and people who are subjects in social media data. We examine the data management practices of researchers who use social media data through a survey and an analysis of published articles. We discuss the data management practices described, how they differ from management of more conventional data types, and the implications for creating and maintaining stable archives for these important research resources. We discuss the similarities and differences between social media data and other types of social science research data, including other types of “found” data, and discuss the implications for data archives including social media data in their collections.National Science FoundationInstitute of Museum and Library Serviceshttps://deepblue.lib.umich.edu/bitstream/2027.42/154750/1/Hemphill Leonard Hedstrom JASIST pre-peer review.pdf1550Description of Hemphill Leonard Hedstrom JASIST pre-peer review.pdf : Pre-peer review articl

Loss-of-function variants in myocardin cause congenital megabladder in humans and mice

Myocardin (MYOCD) is the founding member of a class of transcriptional coactivators that bind the serum-response factor to activate gene expression programs critical in smooth muscle (SM) and cardiac muscle development. Insights into the molecular functions of MYOCD have been obtained from cell culture studies, and to date, knowledge about in vivo roles of MYOCD comes exclusively from experimental animals. Here, we defined an often lethal congenital human disease associated with inheritance of pathogenic MYOCD variants. This disease manifested as a massively dilated urinary bladder, or megabladder, with disrupted SM in its wall. We provided evidence that monoallelic loss-of-function variants in MYOCD caused congenital megabladder in males only, whereas biallelic variants were associated with disease in both sexes, with a phenotype additionally involving the cardiovascular system. These results were supported by cosegregation of MYOCD variants with the phenotype in 4 unrelated families by in vitro transactivation studies in which pathogenic variants resulted in abrogated SM gene expression and by the finding of megabladder in 2 distinct mouse models with reduced Myocd activity. In conclusion, we have demonstrated that variants in MYOCD result in human disease, and the collective findings highlight a vital role for MYOCD in mammalian organogenesis