Nearly a year has passed since the Hair Loss Priority Setting Partnership (PSP) survey was sent to members. The PSP is a UK study funded by Alopecia UK and initiated by the British Hair and Nail Society.
The PSP survey provided those with alopecia, or those with an interest in alopecia, to have their say on what they think researchers should be working on.
A total of 912 individuals submitted a whopping 2747 questions! Every question has been reviewed and some have been excluded for being ‘out of the scope’ by the steering committee. This left 1823 questions to classify into scarring & non scarring alopecia. We then had to assign a research activity code and merge any questions that were asked by more than one person. The questions were then formatted into research questions following the ‘PICO’ principle and a current literature search was completed to cross check whether any of the questions have already been answered by existing research.
This process has taken nearly one year to analyse all the questions submitted. All this work has been done with the dedication and commitment of the steering group and a small team of dermatology registrars in their spare time with no financial reward other than travel expenses.
The Steering group have decided to have two ‘Top Ten Research Priority’ lists as the question data showed a 50/50 breakdown for 'Alopecia Areata' and 'Other types of hair loss'. Alopecia Areata includes totalis, universalis & barbae. Other types includes all scarring hair loss, androgenetic hair loss (female and male pattern) & chemotherapy induced. It was decided that we should split the data in this way to ensure that more questions got through to a Top 10 list.
Next we enter an interim stage (hopefully by mid-September). This means we will ask those who responded to the initial survey to rank around 50 questions, via Survey Monkey, that they feel are important. This will inform a final prioritisation workshop, to be held in November, to finally decide the Top Ten Priorities for research as determined by patients, carers, partners and clinicians.