Final summary (June 2023):

Frontal fibrosing alopecia (FFA) is a chronic inflammatory skin condition causing permanent scarring hair loss, more commonly in women. Our recently published large-scale genetic study has identified that the condition in female patients is underpinned by a strong genetic basis in four different genetic loci. FFA also affects men and causes the body, facial, eyebrow, and scalp hair loss associated with inflammation and scarring. The genetic basis of male FFA has not been investigated to date. We then performed a candidate gene association study on 92 male FFA who were collected from dermatology centres in the UK, US, Germany, Spain, and Greece, and 330 male controls who were selected from different control databases. The study showed, for the first time, the association between male FFA and the risk loci at HLA-B:07:02 and CYP1B1 gene. Moreover, genetic risk scores, which can be used to predict the genetic risk of FFA, were higher in male FFA cases than in the controls in each of the three different cohorts of male FFA. The findings support the theory that FFA is an immune-mediated inflammatory and scarring type of hair loss driven by a strong genetic background. The study also provides further evidence that the abnormality in hormones and foreign substance (xenobiotics) metabolism may play a role in the FFA mechanism. Further genetic studies involving more individuals, both males and females with FFA, can aid in the better understanding of FFA as well as the discovery of potential therapeutic targets in the future.

Dr Rayinda published a scientific Journal article on his research in the Journal of Investigative Dermatology, which has been summarised here.

Progress update (November 2022):

The recruitment process was completed and 130 samples of male Frontal Fibrosing Alopecia were collected from individuals in the UK, Spain, Germany, USA, Italy and Greece. These samples represent 5% of the total cohort of FFA samples they have collected so far. DNA was extracted from blood and saliva samples from each participant. This genetic material has undergone quality control and is now being analysed. The researchers hope to determine what genes are causing male FFA and whether there are any similarities with female FFA. Findings from this study will enable more research into appropriate and effective treatments.

Progress update (November 2021):

Tuntas and his colleagues have published a report in the British Journal of Dermatology of his initial investigation of the clinical records of 17 men with FFA who attended clinics at St John’s Institute of Dermatology between Jan 2014-May 2021. Details of the report can be found here. This highlighted that the men tended to be younger (median age 44) than women with FFA (median age 66) and were more likely to have facial hair loss and sex hormone abnormalities than women with FFA, based on available data. The report calls for further studies to elucidate more the role of autoimmunity and sex hormone metabolism in male FFA.

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Project information

Alopecia UK funds invested: £1,500

When:  October 2020-April 2023

Project type:  Clinical Research

Project Lead:  Dr Tuntas Rayinda

Length of project: 18 months

Research Institute:  King’s College London

Condition of interest:  Male frontal fibrosing alopecia

Funds being used for:  Consumables

Research question:

Is there a genetic basis for male frontal fibrosing alopecia?

Justification for research project:

Frontal fibrosing alopecia is a chronic inflammatory skin condition that leads to permanent hair loss. The condition causes body, facial, eyebrow, and scalp hair loss associated with inflammation and scarring. Frontal fibrosing alopecia is more common in women than in men. A recent study by their group, available here, revealed that there is a strong genetic basis for female frontal fibrosing alopecia, however, the genetic basis of male frontal fibrosing alopecia has not been investigated to date.

The aim of this study is to explore what genes contribute to the development of frontal fibrosing alopecia. The group have managed to recruit the largest cohort of male cases in the UK by collaborating with many other UK sites, in addition to European centres. This project will provide insight into the pathogenesis of male frontal fibrosing alopecia and hopefully enable more research into appropriate and effective treatments.

Who is leading the project:

Dr Tuntas Rayinda is a dermatologist undertaking his clinical PhD research at Kings College London. Dr Rayinda is part of a group which recently published a large-scale genetic study, which identified that the condition in female patients is underpinned by a strong genetic basis.