This important process raises awareness about hair loss disorders and provides a positive direction for hair loss research, helping to ensure the funding goes where it can truly address the needs of the patients and the people who look after them.
The Hair Loss Priority Setting Partnership, which began in January 2014, has chosen the top priorities for research in its two focus areas. On 6 and 7 November 2015, patients, their carers and healthcare professionals took part in two exciting workshops, one for Alopecia Areata and one for other hair loss disorders, both scarring and non-scarring.
Each day began with three discussion groups, facilitated by James Lind Alliance Advisers. After much debate, the initial ranking of the questions was done by each group. The combined ranking scores from all three groups were discussed in the afternoon to finalise the two Top Tens.
Participants thoroughly enjoyed the inclusive process. Julie, a patient delegate said:
“it was wonderful that after the initial introductions, everyone – patients, carers and doctors – were all on a level playing field. Everybody’s viewpoint mattered equally.”
Trichologist Jane Martins said:
“it has been an honour to be included in this very important project, which could make a difference to those with hair loss.”
Workshop one, 6 November 2015 - Top Ten Priorities for Alopecia Areata (includes Totalis, Universalis & Barbae)
- What are the causes of Alopecia Areata? (For example, medications, medical problems, lifestyle, vaccinations.)
- Are immunosuppressant therapies (for example, methotrexate, mycophenolate mofetil) better than placebo in the treatment of Alopecia Areata?
- In Alopecia Areata, are biological therapies (including JAK inhibitors and anti-cytokine therapies) more effective than placebo in causing hair re-growth?
- Are psychological interventions helpful in Alopecia Areata?
- Can progression of Alopecia Areata be prevented by early diagnosis and treatment?
- Do certain foods, vitamins or nutritional supplements improve hair re-growth in Alopecia Areata?
- What can be learnt about Alopecia Areata from other autoimmune conditions?
- In whom does Alopecia Areata hair loss progress and why?
- Do any treatments have a long-term benefit in Alopecia Areata?
- How effective are alternative therapies in Alopecia Areata?
Workshop two, 7 November 2015 - Top Ten Priorities for Hair Loss Disorders (excluding Alopecia Areata)
- What is the most effective treatment for frontal fibrosing Alopecia?
- What are the causes of frontal fibrosing Alopecia? (For example, dietary, genetic, autoimmune, skin care products, medications, hormonal, environmental, vaccination, infection.)
- What are the causes of female pattern hair loss? (For example, genetic, hormonal and childbirth, autoimmune, dietary, other medical conditions, environmental factors.)
- In all types of hair loss, are psychological therapies effective in improving patient outcomes?
- In all types of hair loss, what outcome measures should be used to assess severity of hair loss, progression and impact on the individual?
- Is spironolactone helpful in managing female pattern hair loss?
- In all types of hair loss, does raising ferritin levels/replacing iron improve hair growth? And what is the optimal level of ferritin?
- What is the most effective treatment for Lichen planopilaris?
- In all types of hair loss, do certain diets or nutritional supplements (for example vitamin D) prevent or improve hair loss?
- In female pattern hair loss, does hormone replacement therapy (HRT) halt progression of the hair loss compared to placebo?
What happens next?
The Top Tens are not the end of the process; they are a starting point. They will be publicised at the World Congress for Hair Research in Miami later this month, form the basis for publications in medical journals and be used to generate interest and gain research funding. No questions put forward will be lost – all will be made publicly available for researchers and research funders to see.