Alopecia Areata Registry

Nearly 2% of people in the United States, many of them children, suffer from alopecia areata, a skin disorder that causes hair to fall out in patches. The cause of the disease is not known, and there is presently no cure. However, researchers believe that several genetic factors may play a major role.

MD Anderson is leading a study to create a national registry of alopecia areata patients and their family members, to gather the necessary information for a genetic analysis. The registry, sponsored by the National Alopecia Areata Foundation (NAAF), collects research samples that will help determine the genetic components of alopecia areata. It is a tremendous opportunity to create a well-organized resource to help researchers develop new treatments, diagnostic tools and prevention measures. Patients identified through the study will be first in line for clinical trials of any new therapies for alopecia areata.

MD Anderson is one of five U.S. sites registering alopecia areata patients. Principal investigator for the study is Madeleine Duvic, M.D., chief of dermatology at MD Anderson's Melanoma & Skin Center, and an internationally recognized expert on skin disorders. Our goal is to enroll 4,500 people over the 15-year life of the study. Registration of study participants is under way. 

What is Alopecia Areata? 

Alopecia areata is a disorder that causes sudden hair loss on the scalp and other regions of the body. It affects more than 5 million Americans, 60% of them under the age of 20. Widely believed to be an autoimmune disease, alopecia areata strikes without warning and can "turn off" just as suddenly. It is not a health threat, but can be psychologically damaging, especially for children, to cope with baldness.

Alopecia areata is considered mild, when less than half of the scalp is affected; or extensive, when more than half the scalp is involved. There are nine alopecia areata sub-types, based on the pattern and location of hair loss. The three most common types of alopecia areata are:

Alopecia Areata: bald patches on the scalp
Alopecia Totalis: total loss of scalp hair
Alopecia Universalis: hair is lost on the entire body, including eyebrows, lashes and nose hair

Purpose of Study

The purpose of the study is to create a national registry of people with alopecia areata. A large, centralized database of information from patients and family members will help researchers discover what causes the disease and how to prevent it, and to develop more effective treatments. Genetic analysis of alopecia areata is only possible with a large and diverse group of participants.

Blood samples, digital photographs of the scalp and other clinical data are being collected from study participants at MD Anderson and university-based medical centers in Denver, Minneapolis, New York City and San Francisco. The goal is to obtain blood samples and saliva samples from 2,500 alopecia areata patients and their families. No treatments will be administered during this study. It is for the purpose of data collection only.

MD Anderson has been gathering patient information, blood samples and other medical procedures since fall 2001. To find out if you are eligible for the study, e-mail us at alopeciaregistry@mdanderson.org, or call Joyce Osei, MPH, MHA (Coordinator, Clinical Research) at 1-866-837-1050.