Alopecia Areata Registry Launched in America

The National Alopecia Areata Foundation (NAAF) of America has teamed up with the MD Anderson Cancer Centre to launch a nationwide Alopecia Areata registry.

By collecting data from participants - men, women and children who are US residents - who have been diagnosed with this autoimmune condition, they hope to create a database which can form the basis of an on-going study into this type of hair loss.

On-going observational study

The registry is open to people who have been professionally diagnosed by a dermatologist, with alopecia areata - also known as 'alopecia partialis' (patchy hair loss from the scalp), alopecia totalis (total hair loss of the scalp and sometimes the whole head), and alopecia universalis (complete hair loss from head to toe).

Details are completed via an online form, found at alopeciaareataregistry.org.

However, those who demonstrate a family history of alopecia areata or have particular types of the condition may be invited to complete a further, more detailed questionnaire as well as undertaking a physical exam and having blood samples taken.

Investigating genetic links

Whilst the primary aim of the registry is to establish a database from which to carry out on-going observational research, it also opens up the possibility of follow-up biospecimen studies.

According to the clinical trial submission, registered at clinicaltrials.gov, some participants - presumably with their consent - will have DNA samples taken and analysed. This is to help researchers learn more about links between alopecia areata gene markers. It states that 'Sera will be used to analyse cytokins. Lymphocytes will be used for the creation of B-cell lines'.

In order to explore potential hereditary or genetic associations, researchers are keen to involve 'family members (related by blood) of these [alopecia areata, alopecia totalis and alopecia universalis] patients, preferably sib-pairs plus parents and multiplex families (persons with at least three family members with AA or alopecia universalis and alopecia totalis)'.

For these studies, healthy test subjects who are 'unaffected, non-blood related individuals and do not live in the same household with alopecia areata patients' would be used as controls.

Anyone interested in joining the registry should email [email protected].

Treatment for alopecia areata

The more researchers learn about the various types of alopecia areata, the more likely it is that precisely-targeted treatments can be developed.

At present, alopecia areata treatment is possible in the mild-to-moderate stages. Belgravia has found that topical applications of high strength minoxidil administered directly to the scalp, often showing promising regrowth.

The rate of success for treatment for alopecia totalis or universalis is less encouraging, however, with current options having a success rate of 10 per cent or less.

Research into treatment for severe alopecia areata is continuing apace, with JAK inhibitors, such as ruxolitinib and tofacitinib, leading the way. Whilst these drugs have produced seemingly stellar results in small-scale clinical trials, there are concerns over their long-term efficacy and safety so trials are continuing.