2011 - National Alopecia Areata Foundation

NAAF funded Quality of Life Studies to objectively demonstrate the burden of alopecia areata. This data will also be
presented to the Food and Drug Administration when we find a treatment.
NAAF organized and conducted a scientific briefing for companies with product development interests in treatments
for autoimmune diseases, dermatological conditions, and hair growth or restoration. NAAF encouraged healthcare
companies to develop treatments for alopecia areata.
NAAF continued to update the plan for the Treatment Development Program and monitor whether changes are needed
to advance to our ultimate goal more quickly.
The National Alopecia Areata Foundation had an exhibit booth to attract new research investigators to study our
disease during the Society for Investigative Dermatology Meeting in Phoenix, Arizona, in May 2011. In addition, there
were separate meetings for alopecia areata immunology researchers, National Alopecia Areata Registry researchers,
and the Clinical Research Task Force. All these meetings advance the Alopecia Areata Treatment Development Program.
RESEARCH GRANTS
Daisy Dai, PhD | Dennis Roop, MD, PhD | University of Colorado School of Medicine, Denver, Colorado
Using the sera of alopecia areata patients to identify antigens that are targets of the autoantibodies of alopecia areata patients
This study identified genes of proteins to which there are autoantibodies in alopecia areata. The proposed project was designed to identify antigens
recognized by antibodies produced by patients with alopecia areata. This study will likely produce candidate targets of the host immune system.
Tito R. Mendoza, MS, MEd, PhD | The University of Texas MD Anderson Cancer Center, Houston, Texas
Quality of life in patients with alopecia areata
At the NAAF Corporate Leadership Council meeting, the pharmaceutical companies requested that we have Quality of Life studies completed and published
before they bring drugs to be approved by the Food and Drug Administration (FDA). So this study is a priority for NAAF.
The investigators developed a National Alopecia Areata Registry Symptom Scale (NAARSS), following standard psychometric procedures, to perform secondary
analysis of the National Alopecia Areata Registry (NAAR) data to describe the quality of life of patients with alopecia areata.
Researchers tabulated mean data values and summarized content validity index (CVI) from clinicians’ ratings of the importance of each items as they relate
to concerns of patients, drafted and tested a pilot symptom questionnaire, and then refined it for use with research subjects.
Sultan Mirzoyev, Medical Fellow | Rochelle Torgerson, MD, PhD | Mark Davis, MD | Mayo Clinic, Rochester, Minnesota
Incidence of alopecia areata in Olmsted County, Minnesota
The objective of this study is to assess the incidence and natural history of alopecia areata among unselected patients from the community. The last study
that was published from the data in Olmsted County, Minnesota, was for the years 1975 to 1989. This is a follow-up to the previous study.
Alina Markova, MD | Alpert Medical School of Brown University, Pawtucket, Rhode Island
James A. Solomon, MD, PhD, Director of Ameriderm Research, was coordinating this study
Incidence of alopecia areata in dermatology practice with 1.3 million patients
Data from 69 offices of Advances Dermatology and Cosmetic Surgery and 72 offices of Ameriderm (141 offices in total) across the United Sates was being
studied to determine incidence of alopecia areata.
“Somewhere, something
incredible is waiting
to be known.” –CARL SAGAN
A
R2004
C H
2000
NAAF advocacy and science result in multimillion
dollar funding from the NIH for the National
Alopecia Areata Registry.
The AAD, the Society for Investigative Dermatology
(SID) and the Coalition of Skin Diseases (CSD) join
together to sponsor the First Annual Skin Disease
Research Day, which is dedicated to advocating for
increased federal funding for research.
2009
NAAF embarks on Alopecia Areata
Immunology Research Initiative to
draft Immunology Research Program
Development Plan.
2010
Led by NAAF Scientific Advisory Council member Dr. Angela Christiano
and using cases from the National Alopecia Areata Registry, a team of
investigators at Columbia University Medical Center discover eight
genes that contribute to alopecia areata, including one that plays a
possible role in the onset of the disease.
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