A Baltimore woman encourages alopecia sufferers to participate in the National Alopecia Areata Registry, which is conducting scientific research in hopes of finding a cure to alopecia.

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Location: Baltimore, MD

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Comment by BaldGirlsDoLunch.org on December 22, 2008 at 1:26am
The registry is a data collection tool which itself does not conduct research.

In the publication, Dermatology Times in September 2001, Dr. Duvic is quoted:

"We think alopecia areata is an autoimmune disease directed to the hair follicles and that there are probably several genes that are necessary for it to manifest," principal investigator Madeleine Duvic, M.D., said at the American Academy of Dermatology summer meeting. "The purpose of this registry is to collect the material needed to look into that." ( my italics)

Many alopecia areata sufferers are under the misperception that the blood samples they have provided to date are being actively used for research projects. More accurate is that the registry would like to interest basic scientists in this field of study.

Autoimmunity is highly complex and autoimmune conditions do not have cures.
Comment by rj, Co-founder on December 22, 2008 at 8:12am
Thanks for the clarification, Thea.
Comment by BaldGirlsDoLunch.org on December 23, 2008 at 10:43am
NCT00177073 is the identifier to look at the filing of this study at clinicaltrials.gov.

If more people would go to clinicaltrials.gov and understand what the registry is really designed to do, it would help minimize the hyperbole and misunderstanding perpetuated about it. And even though the study would like to make dna samples available, that does not mean they will be utilized by anyone. Research is a long and slow slog with mostly dead ends and hardly any successes. That we are lucky in our lifetimes to have something like penicillin, for example, can be viewed as a totally freak event.

If this study does come back eventually with useful reporting on psycho-social aspects of the disease( per retrospective questionnaires) that has potential for documenting lifestyle and psychological issues.

Study Type:
Study Design:
Case Control, Retrospective
Official Title:
Alopecia Areata Registry and Immunogenetic Mechanisms

Further study details as provided by University of Minnesota:

Biospecimen Retention: Samples With DNA

Biospecimen Description:

Serum, WBC.

Estimated Enrollment:
Study Start Date:
September 2001
Estimated Study Completion Date:
November 2010

Intervention Details:

Behavioral: questionnaires
Completion of questionaires.

Detailed Description:

The purpose of this registry is to collect patient epidemiology data as well as to provide samples that can be used for understanding the pathogenesis of AA, especially related to its genetic basis as a complex trait. There are three ways one can assess which genes are important: association studies in unrelated individuals, identify by descent in sib-pairs, and linkage or transmission by descent in multiplex families.


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