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Alopecia Areata Registry (NAAR)

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ClinicalTrials.gov Identifier: NCT00069589
Recruitment Status : Active, not recruiting
First Posted : September 30, 2003
Last Update Posted : May 14, 2019
National Alopecia Areata Foundation
Information provided by (Responsible Party):
M.D. Anderson Cancer Center

Brief Summary:
Alopecia areata is the loss of hair in patches that can proceed to loss of all hair (alopecia totalis or universalis). The purpose of the registry is to collect patient information and blood samples from people with alopecia areata.

Condition or disease
Alopecia Areata Alopecia Totalis Alopecia Universalis Autoimmune Hair Loss Alopecia Partialis

Detailed Description:

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.

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Study Type : Observational
Estimated Enrollment : 3100 participants
Observational Model: Case-Control
Time Perspective: Prospective
Official Title: Alopecia Areata Registry and Immunogenetic Mechanisms
Study Start Date : November 2001
Estimated Primary Completion Date : November 2099
Estimated Study Completion Date : November 2099

Resource links provided by the National Library of Medicine

Primary Outcome Measures :
  1. Alopecia Areata Registry [ Time Frame: Registration on-going ]
    Database registration of participants via collection of participant epidemiology data.

Biospecimen Retention:   Samples With DNA
DNA will be analyzed to learn the link between gene markers of traites of alopecia areata. Sera will be used to analyse cytokins. Lymphocytes will be used for the creation of B-cell lines.

Information from the National Library of Medicine

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Ages Eligible for Study:   Child, Adult, Older Adult
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Probability Sample
Study Population

Patients with alopecia areata (AA), both children and adults, who have been diagnosed by a physician with alopecia universalis, alopecia totalis, patchy persistent AA, or transient mild AA. Family members (related by blood) of these patients, preferably sib-pairs plus parents and multiplex families(persons with at least three family members with AA or alopecia universalis and alopecia totalis).

Also, healthy individuals who are unaffected, non-blood related individuals and do not live in the same household with alopecia areata patient are needed as controls.


Inclusion Criteria

  • Diagnosed with alopecia areata by a dermatologist
  • United States resident

Accepts Health Volunteers: Non blood-related individuals who are unaffected with alopecia areata and do not live in the same household with alopecia areata patient.

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00069589

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United States, California
University of California, San Francisco
San Francisco, California, United States, 94143
United States, Colorado
University of Colorado - UCHSC - Health Science Center at Fitzsimons
Aurora, Colorado, United States, 80010-7163
United States, Minnesota
University of Minnesota
Minneapolis, Minnesota, United States, 55455
United States, New York
Columbia University
New York, New York, United States, 10032
United States, Texas
M.D. Anderson Cancer Center
Houston, Texas, United States, 77030
Sponsors and Collaborators
M.D. Anderson Cancer Center
National Alopecia Areata Foundation
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Principal Investigator: Madeleine Duvic, MD M.D. Anderson Cancer Center
Additional Information:
Publications of Results:
Barahmani N, Yang Y, Lopez A, Duvic M. Atopic alopecia areata patients have increased serum Th1 Cytokine profiles. 66th Annual meeting of Society for Investigative Dermatology. St.Louis, MO, May 2005. JID 124 (4): A100, 2005.
Breuer-McHam J, Hunzicker K, Barahmani N, Zhang Q, Babu D, Christiano A, Hordinsky M, Norris D, Price V, Duvic, M. Epidemiologic and disease associations in participants of the national alopecia areata (NAAR) registrants. Accepted by Society for Investigational Dermatology, April 12, 2004. JID 122 (3): A107, 2004.
de Andrade M, Barahmani N, Hunzicker K, Zhang Q, Joan Breuer- McHam, Joyce Osei, Daniel Babu, Qingyi Wei, Reveille J, Duvic M. HLA Class II associations confirm alopecia areata phenotypic subsets. 66th Annual meeting of Society for Investigative Dermatology. St. Louis, MO, May 2005.JID 124 (4): A107, 2005.

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Responsible Party: M.D. Anderson Cancer Center
ClinicalTrials.gov Identifier: NCT00069589    
Obsolete Identifiers: NCT00177073
Other Study ID Numbers: NIAMS-097
First Posted: September 30, 2003    Key Record Dates
Last Update Posted: May 14, 2019
Last Verified: May 2019

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Keywords provided by M.D. Anderson Cancer Center:
Alopecia Areata
Alopecia Partialis
Alopecia Totalis
Alopecia Universalis
Autoimmune Hair Loss
Additional relevant MeSH terms:
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Alopecia Areata
Hair Diseases
Skin Diseases
Pathological Conditions, Anatomical