Trial Information

Alopecia Areata Registry and Immunogenetic Mechanisms

Alopecia areata is a condition in which hair is lost either from part of the scalp, all of
the scalp, or the entire body, and it affects 1% to 2% of the population. It is thought to
be an autoimmune disease and in some cases the disease is hereditary. The Alopecia Areata
Registry will collect information and blood samples from clinically well-characterized
patients with these three forms of alopecia areata: alopecia partialis (patchy loss of the
scalp hair), alopecia totalis (total loss of all scalp hair), and alopecia universalis
(complete loss of all hair everywhere on the body). This will be a collection of patients in
multi-generational families, twins, single patients with patchy, persistent transient
alopecia areata or long-standing alopecia totalis/universalis and with controls (persons
unaffected and not related to alopecia patients). Information from these patients will be
used to search the human genome for disease-associated loci and/or genes. Researchers
interested in doing pathophysiology or treatment studies of this disease will also be able
to contact patients having the appropriate form of the disease for the studies in question.

Patients who have been diagnosed with alopecia areata by a dermatologist will be eligible
for the registry. Patients will fill out an information form online
(alopeciaareataregistry.org). Patients who have a family history or specific types of
alopecia will be invited to participate in a more detailed questionnaire and physical exam
and have blood samples drawn.