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Past Opportunities to Provide Input
- PCORI's Proposed Research Agenda (2021-2022)
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- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
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- 4: Standards for Preventing and Handling Missing Data
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- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
Although the primary purpose of our ability to smell and taste is to protect us from danger, we often take these vital senses for granted. Jenifer Trachtman, Smell for Life Campaign Director at the Monell Chemical Senses Center in Philadelphia, calls these the “Cinderella senses,” meaning they are frequently overlooked and forgotten.
The COVID-19 pandemic, however, has brought them to the forefront since so many people are experiencing loss of both taste and smell due to coronavirus infection. According to Trachtman, an estimated 2-4 million North Americans will have long-term smell and/or taste loss from COVID-19. This is in addition to the millions of people whose smell and taste are impaired by other causes like head injury, medications, and chemical exposures.
What people are quickly finding out is that smell and taste dysfunction is much more than the nuisance of not being able to savor their favorite pizza or ice cream, but it can also be dangerous—interfering with the ability to detect potential threats, including spoiled foods and even gas leaks. Not to mention the nutrition-related challenges of a condition called parosmia–the inappropriate perception of odors and tastes–which is a type of smell and taste dysfunction that affects many people with COVID-19.
Nancy Rawson, PhD, MSc, vice president and associate director of the Monell Center, is the recipient of an Engagement Award from PCORI that supported the first nationwide survey about smell and taste dysfunction. Rawson and her team worked in collaboration with the Smell and Taste Association of North America (STANA) and the Ear, Nose, and Throat department at Jefferson Health in Philadelphia to create and distribute the survey in order to understand the scope of this problem more fully.
It was only by coming together as a team of researchers, clinicians and patients that we could create such a comprehensive survey and reach so many people experiencing smell dysfunctions.Nancy Rawson, PhD MSc Project Lead, PCORI Engagement Award
The survey results are currently being analyzed, but the response was impressive. Trachtman explains that they expected about 300 responses, budgeted for 1,000, and ended up receiving more than 6,000 responses. Survey respondents hail from all 50 states as well as Washington, DC, and Puerto Rico. Rawson is pleased with this “phenomenal” outpouring and notes the response has “demonstrated the huge unmet need to address the concerns of patients with smell dysfunctions.”
Through review of the survey responses, Rawson, Trachtman, and their team hope to learn more about the needs and concerns of people with impaired smell and taste. As the needs of this community become better understood, the goal is to develop patient-centered research questions for further study.
Trachtman notes that even the preliminary process of collaborating with patients and clinicians to develop the survey has already helped identify areas of potential advocacy for this underserved population. Rawson adds that incorporation of patient voices has been key and “it was only by coming together as a team of researchers, clinicians and patients that we could create such a comprehensive survey and reach so many people experiencing smell dysfunctions."
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