Hair Loss Priority Setting Partnership (COMPLETED)

Alopecia UK funds invested: £22,235

When: 2013

Project type: Priority setting Partnership

Condition of interest: All types of hair loss

Length of Project: 2 years

Research question:

The aim of a PSP is to identify the unanswered questions about a disorder, in this case hair loss, from the perspective of those with the disorder, their partners/parents/carers and treatment providers, and then prioritise those top 10 questions that participants agree are the most important.

Justification for the research project:

As a result of our attendance and presentation at the World Congress for Hair Research in 2013 we received a £20,000 donation from the European Hair Research Society. This allowed us to fund a Hair Loss Priority Setting Partnership (PSP) with the James Lind Alliance, the results of which were published in two papers, one in 2017 and the other in 2018. The aim of a PSP is to identify the unanswered questions about a disorder, in this case hair loss, from the perspective of those with the disorder, their partners/parents/carers and treatment providers, and then prioritise those top 10 questions that participants agree are the most important.

Who led the project:

The PSP was steered by leading UK clinicians and patients, Alopecia UK and the British Hair and Nail Society. A total of 912 people responded to the initial survey, submitting 1,823 questions that were included in the PSP.

What were the outcomes?

The Hair Loss PSP took two years to complete and after a lengthy process, we ended up with two Top 10 lists (shown below) along with links to pdfs of the published results.

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?

You can see the full write up and how we arrived at this top 10 here.

Top Ten Priorities for Hair Loss Disorders (excludes 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?

You can see the full write up and how we arrived at this top 10 here.

Research funded in response to the PSP:

As a result of the issues highlighted in the PSP, three projects have been funded by Alopecia UK, each addressing different priorities from the alopecia areata top 10.

Characterising the role of antigen presenting cells in Alopecia Areata (Addressing priority 1)

The effectiveness of mindfulness based cognitive group therapy for social anxiety symptoms in people living with Alopecia Areata (Addressing priority 4)

Coeliac Disease and Micronutrient Deficiency in Alopecia Areata: Association or Coincidence? (Addressing priority 6)

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