Monell-Center-Led Team Receives Patient Engagement Award to Create Research Roadmap on Taste and Smell Disorders

For immediate release
Contact: Karen Kreeger, kkreeger@monell.org

Project is relevant to COVID-induced cases, as well as other taste and smell disorders.

PHILADELPHIA (February 4, 2022) – The Monell Chemical Senses Center has been approved for a $200,000 Eugene Washington Patient-Centered Outcomes Research Institute (PCORI) Engagement Award. Monell Vice President Nancy Rawson, PhD, will lead the program, with Monell faculty Member Pamela Dalton, PhD, MPH.

The funds will support the endeavor entitled, “Shared Agenda for Clinical Research on Smell and Taste,” a partnership among Monell, the Smell and Taste Association of North America (STANA), and the Otolaryngology Department at Thomas Jefferson University Hospital in Philadelphia.

The program will establish a shared research plan and roadmap for studying smell and taste disorders. It has been awarded through PCORI’s special COVID funding cycle in light of the high numbers of people experiencing COVID-related sensory loss. “Achieving our overall goals will greatly accelerate our ability to address the needs of all patients experiencing smell and taste disruption,” said Rawson.

The project builds on Monell’s long-time Chemosensory Clinical Research Center with Jefferson, which operated with funding from the National Institutes of Health (NIH), from 1986 to 2009 to assess the taste and smell function of patients. “I am delighted to extend this fruitful collaboration that leverages basic science in the service of our patient population,” said Gurston Nyquist, MD, Professor of Otolaryngology at Jefferson and the physician on the PCORI team.

In addition, work conducted through the PCORI project will review and update recommendations that arose from the 2018 Identifying Treatments for Taste and Smell Disorders conference (ITTSD). This forum brought together an international group of researchers, clinicians, and patients to identify steps needed to develop treatments for smell and taste disorders.

“A key proposal from the conference was to increase awareness and research capacity through patient advocacy,” said Katie Boateng, STANA president, whose genesis in late 2020 was an important early outcome of the ITTSD meeting. As North America’s first advocacy group for people with taste and smell disorders, STANA is the model partner to foster patient-focused goals espoused by PCORI.

As the third year of the pandemic nears, scientists predict that in the US alone, more than three million people will have sustained and/or long-term smell loss and one million with taste loss from COVID-19. They join the millions already living with taste and smell disorders.

“Before the pandemic, the senses of smell and taste were almost taken for granted compared to other senses. Now we are all becoming more aware how important they are for safety and well-being,” said Nyquist. “There is so much more to do, and medical professionals like myself can learn from our patients.”

“The need for a unified way forward on clinical research for chemosensory loss has never been more urgent,” said Rawson. “Yet, as we scan the literature, the US accounts for only one in five published papers on taste and smell disorders worldwide, and according to the NIH, currently there is only one active clinical trial registered to evaluate interventions in the US.”

The project comprises three goals:

  1. Prioritized research agenda to define needs and gaps in existing data and embed the full spectrum of patient experiences into the taste and smell research agenda
  2. Memorandum of agreement among Monell, Jefferson, and STANA to establish a shared vision, joint actions, anticipated long-term outcomes, and milestones
  3. Stakeholder roadmap to disseminate results and develop a plan to grow and sustain the resources, partnerships, and infrastructure needed for patient-centered outcomes research on taste and smell disorders

“A future activity will be a follow-up to the 2018 ITTSD conference,” said Rawson. “This new conference will review the status of the initial recommendations and present the updated and prioritized research agenda, seeking input from a broad pool of US-based patients with smell and taste disorders and healthcare practitioners and researchers on symptoms and challenges specifically related to the needs of this growing population.”

According to Greg Martin, PCORI’s Acting Chief Engagement and Dissemination Officer, “This project was selected for Engagement Award funding because it will build a community equipped to participate as partners and develop partnerships and infrastructure to disseminate PCORI-funded research results. We look forward to working with the Monell Center throughout the course of their 18-month project.”

Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities, and organizations interested in and able to participate in, share, and use patient-centered data and resources. This PCORI award given to Monell is the first to support the taste and smell loss patient community.

The Monell Center project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, please visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.

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The Monell Chemical Senses Center is an independent nonprofit basic research institute based in Philadelphia, Pennsylvania. Founded in 1968, Monell‘s mission is to improve health and well-being by advancing the scientific understanding of taste, smell, and related senses, where our discoveries lead to improving nutritional health, diagnosing and treating disease, addressing smell and taste loss, and digitizing chemosensory data.