Hair loss (alopecia) is a common problem that has been shown to have a significant impact on psychological well-being and quality of life, and can sometimes also signify an underlying medical problem. Treatment of hair loss disorders is often challenging due to a number of factors, including limited understanding of the natural history of the condition, poor disease definitions, lack of validated severity scales and generally poor quality of evidence for treatment. Only a limited number of hair loss disorders have good quality randomised controlled trial (RCT) evidence to guide treatment choices. Further, access to supportive therapies (e.g. psychological support, wig provision, etc) can vary across the country and evidence for the most effective use of these interventions is generally poor.
With kind funding from Alopecia UK, the British Hair and Nail Society proposed a priority setting partnership to encompass all types of hair loss with an aim of focusing clinical hair research on areas that meant the most to people with hair loss and clinicians/healthcare professionals alike. Inspired by previous PSPs in the field of dermatology, we hope to draw the attention of potential research funders to the unmet need in this distressing and under-researched group of conditions.
The challenge of our particular PSP is how to reach, and harvest questions from, individuals representing many different, and rare, hair loss conditions. Many sufferers do not know their specific diagnosis and possibly do not seek treatment or are not able to access secondary and tertiary care specialists to achieve this. We feel that by keeping the process as open as possible we can harness expertise and opinions from individuals who have previously felt that their concerns and research priorities may have gone unheard.
The process is off to a flying start with the initial survey under revision after a successful pilot, with the aim of the survey going live in early September. The steering group is currently in the process of identifying and engaging potential partners who will help publicise the survey.
The steering group consists of 12 members including Jennifer Chambers (Patient and Admin lead), Paul Farrant (Dermatologist), Matt Harries (Dermatologist), Nigel Hunt (Psychologist), Andrew Messenger (Dermatologist), Carole Michaelides (Trichologist), Karena Moore-Millar (Patient and researcher in wig technology), Rachael Robinson (General Practitioner with Special Interest in Dermatology), Julie Rodgers (Patient), Jackie Tomlison (Alopecia UK trustee, nurse and patient), Sheela Upadhyaya (JLA Adviser and chair), and me (Dermatologist).