The incorporation of Internet resources and the use of social media among patients, clinicians, advocates, and researchers in the field of hematology and oncology are growing in importance. Utilization of online information sharing is rising, especially among those involved in rare blood cancer fields, which have generally featured a paucity of reliable, updated information. In particular, blastic plasmacytoid dendritic cell neoplasm (BPDCN), an uncommon, but highly aggressive hematologic malignancy, is one example of a cancer with limited information readily available to the general public. The infrequent incidence of BPDCN, the challenges in recognizing the disease and making a clinico-pathologic diagnosis, and the lack of standard therapies are some of the reasons accounting for the dearth of expert opinion, scientific publications and discussion, and accessibility of online information for patients. This article highlights social media and Internet sources available for patients and other healthcare stakeholders in the field of BPDCN and discusses our efforts to increase awareness and propagation of BPDCN electronic resources, including the founding of an online Twitter community, #BPDCN.
Social media Twitter BPDCN Disease-specific hashtag Rare disease #BPDCN
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This research is supported in part by the MD Anderson Cancer Center Support Grant P30 CA016672. The authors thank Dr Matthew Katz and the creators of the Cancer Ontology Tag (CTO) Program for their example and inspiration, and the founders and members of Symplur.com, including Audun Utengen and the Healthcare Hashtags (@healthhashtags) Project for their continued analysis and support.
Vikas Gupta received research grants from Novartis, Incyte, Gilead, and Promedior through his institution; served on scientific advisory board of Novartis and Incyte and received honorarium from Novartis/Incyte.
Michael A. Thompson is on Advisory Boards: AIM Specialty Health, BMS, Celgene, Takeda, VIA Oncology.
Andrew A. Lane reports research support, Consulting: Stemline.
Human and Animal Rights and Informed Consent
This article does not contain any studies with human or animal subjects performed by any of the authors.
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