Alopecia Areata Registry (NAAR)

Alopecia Areata Registry and Immunogenetic Mechanisms

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.

Study Overview

• Status: Active, not recruiting
• Conditions: 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.

• Study Type: Observational
• Enrollment (Anticipated): 3100

Contacts and Locations

Study Locations

• United States
  • California
    • San Francisco, California, United States, 94143
      • University of California, San Francisco
  • Colorado
    • Aurora, Colorado, United States, 80010-7163
      • University of Colorado - UCHSC - Health Science Center at Fitzsimons
  • Minnesota
    • Minneapolis, Minnesota, United States, 55455
      • University of Minnesota
  • New York
    • New York, New York, United States, 10032
      • Columbia University
  • Texas
    • Houston, Texas, United States, 77030
      • M.D. Anderson Cancer Center

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: ADULT; OLDER_ADULT; CHILD
• Accepts Healthy Volunteers: Yes
• Genders Eligible for Study: All

• 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.

Description

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.

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Alopecia Areata Registry	Database registration of participants via collection of participant epidemiology data.	Registration on-going

Collaborators and Investigators

• Sponsor: M.D. Anderson Cancer Center
• Collaborators: National Alopecia Areata Foundation

Publications and helpful links

General Publications

• Duvic M, Norris D, Christiano A, Hordinsky M, Price V. Alopecia areata registry: an overview. J Investig Dermatol Symp Proc. 2003 Oct;8(2):219-21. doi: 10.1046/j.1087-0024.2003.00814.x.
• 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.
• Barahmani N, de Andrade M, Slusser JP, Wei Q, Hordinsky M, Price VH, Christiano A, Norris D, Reveille J, Duvic M. Human leukocyte antigen class II alleles are associated with risk of alopecia areata. J Invest Dermatol. 2008 Jan;128(1):240-3. doi: 10.1038/sj.jid.5700973. Epub 2007 Jul 19. No abstract available.
• Ahmed AM, Barahmani N, Duvic M; National Alopecia Areata Registry. Familial alopecia areata and chronic thrombocytopenia. J Am Acad Dermatol. 2008 May;58(5 Suppl 1):S75-7. doi: 10.1016/j.jaad.2007.05.017.
• Rodriguez TA, Duvic M; National Alopecia Areata Registry. Onset of alopecia areata after Epstein-Barr virus infectious mononucleosis. J Am Acad Dermatol. 2008 Jul;59(1):137-9. doi: 10.1016/j.jaad.2008.02.005. Epub 2008 Mar 7.
• Martinez-Mir A, Zlotogorski A, Gordon D, Petukhova L, Mo J, Gilliam TC, Londono D, Haynes C, Ott J, Hordinsky M, Nanova K, Norris D, Price V, Duvic M, Christiano AM. Genomewide scan for linkage reveals evidence of several susceptibility loci for alopecia areata. Am J Hum Genet. 2007 Feb;80(2):316-28. doi: 10.1086/511442. Epub 2007 Jan 5.
• Barahmani N, de Andrade M, Slusser JP, Zhang Q, Duvic M. Major histocompatibility complex class I chain-related gene A polymorphisms and extended haplotypes are associated with familial alopecia areata. J Invest Dermatol. 2006 Jan;126(1):74-8. doi: 10.1038/sj.jid.5700009.

Helpful Links

• Click here for more information on the Alopecia Areata Registry
• National Alopecia Areata Foundation (NAAF) official website

Study record dates

Study Major Dates

• Study Start: November 1, 2001
• Primary Completion (ANTICIPATED): November 1, 2099
• Study Completion (ANTICIPATED): November 1, 2099

Study Registration Dates

• First Submitted: September 29, 2003
• First Submitted That Met QC Criteria: September 29, 2003
• First Posted (ESTIMATE): September 30, 2003

Study Record Updates

• Last Update Posted (ACTUAL): May 14, 2019
• Last Update Submitted That Met QC Criteria: May 13, 2019
• Last Verified: May 1, 2019

More Information

Terms related to this study

• Keywords: Autoimmunity; Baldness; Alopecia Areata; Alopecia Universalis; Alopecia Totalis; Hair; Alopecia Partialis; Autoimmune Hair Loss
• Additional Relevant MeSH Terms: Skin Diseases; Pathological Conditions, Anatomical; Hypotrichosis; Hair Diseases; Alopecia; Alopecia Areata
• Other Study ID Numbers: NIAMS-097; HHSN268200682279C

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No