Research

James Lind Priority Setting Partnership (PSP): Hair Loss

Alopecia UK funds invested: £22,235

When: 2013-2015

Project type: Priority setting Partnership

Condition of interest: All types of hair loss

Length of Project: 2 years

Research question:

The James Lind Alliance (JLA) is an initiative established in 2004, designed to bring people affected by a specific condition, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 unanswered questions or gaps in current knowledge of a condition, that they agree are the most important.

The aim of this is to make sure that health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives.

Justification for the research project:

As a result of our attendance and presentation at the World Congress for Hair Research in 2013, Alopecia UK 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 (linked to below).

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 one for Alopecia Areata (including Totalis, Universalis and Barbae), and one for hair loss disorders excluding Alopecia Areata.

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:

The Top Ten priorities are not the end of the process; they are a starting point. No questions put forward will be lost – all were made publicly available for researchers and research funders to see. Going forward, researchers are asked to consider these priorities when applying for funding from Alopecia UK, and in their wider research. A number of projects have already been undertaken, each addressing different priorities from the hair loss top tens.

Alopecia areata

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

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

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

The Rapid Access Clinic for Alopecia Areata, PhD bursary (Addressing priorities 1, 5, 8 for AA)

Key factors of psychological support (Addressing priority 4 for AA)

Immunometabolism of AA (Addressing priorities 1, 6 for AA)

Seeking the trigger for AA (Addressing priority 1 for AA)

Alopecia areata registry (Addressing priorities 8, 9 for AA)

All types of alopecia

MicroRNA targets in Scarring Alopecia (Addressing Priority 2 for all types)

Microbiota signature of alopecias (Addressing priority 1 for AA and priority 2 for all types)

Genetic study of female FFA (Addressing priority 2 for all types)

Genetic study of male FFA (Addressing priority 2 for all types)

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