Abstract
The use of social media in clinical trials, for recruiting and retention as well as for collecting data, has become increasingly common. However, little has been documented in respect to the guidelines for its use and the possible effects it may have on clinical trials. In this review, we provide an overview of the guidance that has been published and muse the pros and cons of the use of social media in trials for rare disease.
Highlights
Gardar Arnason, University of Tübingen, Germany edu Specialty section: This article was submitted to ELSI in Science and Genetics, a section of the journal Frontiers in Genetics
We suggest there are three important factors contributing to this revolution: 1. The expansion of patient advocacy that began during the AIDS epidemic of the 1980s 2
We found that at our own institution there are no specific requirements for researchers engaging with subjects online (other than restrictions offered by the Health Insurance Portability and Accountability Act (HIPAA)
Summary
“There’s a revolution going on.” It is a revolution in the design and implementation of clinical trials (CTs). It is a revolution in the design and implementation of clinical trials (CTs) This revolution seems most evident in research that affects patient populations that were long left out of the process: those affected by childhood and rare diseases. Clinician scientists could only dream of organizing trials for patients with rare disease, fearing the huge challenge of meeting rigors of “statistical power” with a small pool of patients. In this new age, we are seeing CTs with n of one. Is some of what has been written in recent years with regard to this question
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