A Most Exciting Advance For Alopecia Areata Research

By David A. Norris, M.D.
Department of Dermatology
University of Colorado Health Sciences Center
Denver, Colorado

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has announced that it will fund a disease registry for alopecia areata. This award of more than $2.7 million over five years will establish a registry consisting of five sites across the United States: Houston, Denver, San Francisco, Minneapolis, and New York.

This commitment by NIAMS to the advancement of alopecia areata research creates an enormous opportunity to further basic, clinical, and translational studies in alopecia areata. It will provide an essential resource for all investigators interested in studying alopecia areata and will stimulate opportunities for additional research support from federal and private sources.

What is a disease registry?

A disease registry is an organized network of centers that identify and register patients with a particular disease, collect relevant biological research samples from selected families, catalogue and store medical and background information on the patients in a central database, and make this information available to investigators interested in studying the disease.

A disease registry is like the pint of water used to prime a pump that can then deliver gallons of water. The disease registry itself does not conduct the basic research, but it facilitates research by all investigators whose selection parameters require patient populations that are well characterized by accepted criteria, and especially patients from families with multiple members affected by the disease in question. Once established, a registry becomes a research resource that can support many diverse types of investigation and clinical trials performed by other investigators. It provides critical structure and uniformity to subsequent research by providing precious clinical material. It increases the ability of investigators to pursue promising research directions.

How does a disease registry work?

The Alopecia Areata Registry will consist of five sites spread across the United States, where patients will be examined and registered and will have blood and tissue samples taken when appropriate. The samples and data will be sent to the University of Texas, Houston where they will be collected and stored by Principal Investigator Dr. Madeleine Duvic. A steering committee made up of key members of the registry will oversee the functions of the registry and determine distribution of material to appropriate investigators.

Where can patients be seen?

The following are the sites of the registry and the senior investigators at each site. Please keep in mind that patient inquiries are not being accepted until sometime in the summer of 2001, as the mechanism for implementing the registry is still being established. The exception to this is the M.D. Anderson Cancer Center in Houston, Texas, which is accepting initial inquiries for screening patient participants. When the registry sites are ready to enroll participants, appropriate contact information will be placed here on the NAAF website. 

• University of Texas, Houston, M.D. Anderson Cancer Center
  Madeleine Duvic, M.D., Principal Investigator. Dr. Kathleen Hunzicker, Clinical Coordinator. Note: If you would like to participate in the registry and live in the Houston metropolitan area (or plan an extended visit), please contact Dr. Hunzicker directly by phone at 713-794-1442 or send an email message to her at khunzick@mail.mdanderson.org. 
  
  
• University of Colorado Health Sciences Center, Denver
  David Norris, M.D., Co-principal Investigator
  Richard Spritz, M.D., Consultant
  
  
• Columbia University, New York, New York
  Angela Christiano, Ph.D., Consultant
  
  
• University of Minnesota, Minneapolis
  Maria Hordinsky, M.D., Consultant
  
  
• University of California, San Francisco
  Vera Price, M.D., Consultant

How will this registry advance research in alopecia areata?

A well-organized and well-run registry will facilitate research in alopecia areata and maximize the effectiveness of investigation by assuring the following:

• Uniform diagnostic and classification criteria will be applied to patients studied.
• Fair access to patients and tissues will be provided to all credible investigators with well-conceived projects, without regard to possible scientific overlap amongst projects.
• Standardized and uniform information will be available on each patient.
• Patient studies will be coordinated with studies in known animal models.

What type of research in alopecia areata will be facilitated by this registry?

Material collected by the registry will greatly facilitate studies of the genetic basis of alopecia areata, of immunologic trigger mechanisms involved in its onset, of basic hair biology related to alopecia areata progression and response to treatment, and of neurobiology and angiogenesis related to the disease.

Clinical trials and better understanding of disease subsets are also expected outcomes of the registry.

How do I participate in this Alopecia Areata Registry?

Each center will be mobilized to register patients by late summer 2001. The addresses and the contact persons at each center will be advertised through NAAF and other appropriate organizations. Check the NAAF Web site or call the NAAF office to check exact dates. Patients who were previously entered in studies with Dr. Duvic will be re-contacted to complete the new paperwork that is required by the National Institutes of Health to be part of the registry.

Patients from families with multiple family members affected with alopecia areata will be the most sought after, especially sibling pairs, twin pairs, or any combinations. Patients from families with other autoimmune disorders (vitiligo, pernicious anemia, lupus erythematosus, thyroiditis, and atopy) will also be greatly valued. Multiple family members from these families will be examined, interviewed, and asked to donate blood or have skin biopsies when appropriate.

In addition, patients with alopecia universalis or alopecia totalis will be registered even if no other family members are affected. Patients with patchy alopecia areata of more than one year’s duration and patients with multiple episodes of patchy hair loss and then regrowth will also be registered, providing the opportunity for investigation of these subsets of alopecia areata and for contrast with the more severe forms of alopecia areata.