AbScent, a UK charity that supports people with smell loss, is offering free membership in exchange for participation in a research project.
The charity’s Sense of Smell Project survey seeks to find out more about the condition and how it affects people. A collaboration between patients with smell disorders and scientists, it requires completion of a detailed questionnaire via the AbScent website.
Because AbScent feels that submitting patient stories is more valuable to the patient and research community alike, it is encouraging participation through the offer of free membership.
All information on patient stories is anonymised upon submission and the data will be analysed by two leaders in the area of smell disorders: the University of Dresden’s Professor Thomas Hummel, and Robert Pellegrino of the University of Tennessee. By collecting the data, it is hoped that the Sense of Smell Project will be able to spot clusters in experience that will help identify new areas for future study.
Chrissi Kelly, Founder of AbScent, lost her sense of smell in 2012 after a sinus infection. She said:
“Smell loss changed my life, my personality and my view of the world. It is a unique bereavement, impossible to put into words. I felt untethered from my daily experience.
“By the time the patient gets to the doctor, the problem has often spread beyond the nose, altering the quality of the person’s life and relationships. We don’t just need doctors; we need strategies for self-help and self-care. By launching the Sense of Smell Project I hope we can unearth much more information about smell loss, and people’s experiences, so that more can be done to support patients.”
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