Our Research Priorities
In September 2020, Fifth Sense started working with the James Lind Alliance and the University of East Anglia to identify research priorities in the field of smell and taste disorders.
We have worked to engage and involve the people we represent in research since we were established in 2012. Delivering a Priority Setting Partnership (PSP) to establish a set of research priorities had been a key goal since our inception.
In 2020, as the Covid-19 pandemic was at its height and interest in smell and taste research had grown significantly, Fifth Sense successfully applied to the James Lind Alliance to undertake the Smell and Taste Disorders Priority Setting Partnership, supported by a grant from the National Lottery Community Fund.
The PSP involved a number of stages between September 2020 and January 2022:
- A steering group for was established, consisting of a group of stakeholders representing clinical, patient and research domains. It included Ear, Nose and Throat specialists, a Neurologist, General Practitioner, Psychologist and six patient representatives covering the main causation groups for smell and taste disorders. The Steering Group was chaired by an independent JLA Advisor.
- An electronic survey was widely advertised to all stakeholders (patients, healthcare professionals, family, carers, researchers) asking them to submit three uncertainties they wanted answering by future research.
- Independent analysts from the University of E Anglia consolidate the responses, removing out of scope questions, to create a list of summary questions. A literature search was conducted to remove any questions that had already been answered. A second survey was used to determine the top questions from which the final top 10 would be selected.
- A final workshop involving patients, their carers and healthcare professionals was held in Manchester to debate and agree the final top 10 priorities. The workshop was facilitated by independent JLA Advisors.
Our Top 10 Research Priorities
- How can we further our understanding of the mechanism of disease in the nerve pathways that affect smell and taste disorders, including where parosmia and phantosmia exist?
- How can medical professionals be better educated in treating smell and taste disorders?
- Do stem cells have the potential to treat smell and taste disorders?
- How can regeneration of smell receptors be used to treat smell or taste disorders?
- What are the mental health consequences of smell and taste disorders and how can these be managed effectively?
- How can medical technology (e.g. implants) be used to rehabilitate sense of smell and taste?
- How can the testing and investigations into smell and taste disorders be improved?
- What role does genetics play in smell and taste disorders?
- Are there any effective treatments for smell and taste disorders due to COVID-19 or any other viral infection?
- What coping strategies help in dealing with smell and taste disorders?
We would like to say a big thanks to our steering group members, data analysts and everyone who participated in our surveys and attended the final workshop.
We would also like to thank the following organisations for supporting the Smell and Taste Disorders PSP:
American Academy of Otolaryngology – Head and Neck Surgery
American Rhinologic Society
British Psychological Society
British Rhinology Society
Clinical Olfactory Working Group (COWoG)
European Chemoreception Research Organization
European Rhinologic Society
Global Consortium for Chemosensory Research (GCCR)
Headway – the brain injury association
International Symposium on Olfaction and Taste (ISOT)
Monell Chemical Senses Center
Rocky Mountain ENT Center
Royal College of Physicians
Royal College of Physicians and Surgeons of Glasgow
Royal College of Psychiatrists
Royal College of Surgeons Ireland
Royal College of Surgeons – Edinburgh
Royal College of Surgeons – England
United Kingdom Acquired Brain Injury Forum
UK Semio-chemisty Network
University Florida Center for Smell and Taste