Updated: Jan 31, 2020
Selected article written by Wicks (2019)
This paper highlights the coming of age of N-of-1 trial methodology for patients and the significant impact that digital innovations have had on its evolution over the past 15 years. It showcases the work surrounding conditions such as Amyotrophic Lateral Sclerosis (ALS), a debilitating motor neurone disease, and how patients have come to the forefront of being actively involved in the research process, despite ongoing concerns from the professional research community. These patients with debilitating conditions serve as examples of frustration with waiting for new developments in the form of long-awaited publications and, at times, decide to take control of their disease by using novel methods outside the realm of academic rigour and ethical approval. While a challenging area both for research validity and progressing knowledge, these patient pioneers find themselves in good company with other self-experimenters in other fields.
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