The Interim survey is now OUT and gone to everyone who expressed an interest at the initial survey.
Last year Alopecia UK and The British Hair and Nails Society, in conjunction with The James Lind Alliance, launched the Hair Loss Priority Setting Partnership to find the top 10 unanswered research questions, giving people affected by hair loss and healthcare professionals a voice in setting priorities for research.
After canvassing the views of the community we have developed an impressive list of research questions that need prioritising. The survey submissions have been checked and formatted into questions defined as uncertainties because they cannot be answered by an up-to-date systematic review of relevant research evidence.
Due to the vast number of questions we received, the most voted for questions will go forward to two separate workshops, so that they can be narrowed down to the top 10 questions in two categories:
1. alopecia areata (includes totalis and universalis)
2. all other hair loss disorders (excluding alopecia area)
We will be holding a final workshop, following the interim survey, in November and will aim to publish the top ten for both shortly after.
Nearly one year ago we ask everyone from patients, carers & clinicians to tell us what you think researchers should be working on.
We had 912 individuals submit a total of 2747 questions. Every question has been reviewed and some have been excluded for being ‘out of the scope’ by the steering committee. This left us with 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 research.
You can see why 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 & barbea. Other includes all scarring hair loss types, 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 you to rank around 50 questions, via Survey Monkey, that you feel are important to you. 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.
Updated August 2015.
Updated Sept 2014
Hair Loss Research
Make your voice heard and your opinion count!
We want people with alopecia (hair loss) to be at the centre of hair loss research planning. To that end, we’re collaborating with leading organisations and clinicians to help people with alopecia influence the priorities for research into treatments for the condition.
What do you think researchers should be working on? Are you uncertain that some alopecia treatments are effective? Do you feel research into these treatments should be more carefully reviewed? If so, we’d like to hear from you and we will be distributing a survey on the subject soon.
The Hair Loss Priority Setting Partnership (PSP) is an initiative steered by leading UK clinicians & patients, Alopecia UK, the British Hair and Nail Society, and The James Lind Alliance.
We are asking everyone whose life is affected by hair loss and people involved in treating hair loss to think about what's wrong with existing treatments and what improvements you'd like to see in research. This is an important opportunity to make your voice heard and your opinion count.
The James Lind Alliance are an integral part of the Hair loss PSP. They facilitate and provide an infrastructure to help patients and clinicians work together to prioritise research questions. They do this by asking patients and others to highlight their concerns and questions about treatments available and not yet available, as well as, gaps that you think research hasn't answered.
Your questions are used to see if the answer exists and provides new questions to help ensure research funding hits what we agree needs answering. By taking part in this process, people with alopecia can actively participate and contribute to the next wave of exciting research projects within the UK.
Please check out the Q&A page for more background information on the partnership or go directly to the survey below from 8th September until 31st October: