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THE NATIONAL ALOPECIA AREATA REGISTRY, BIOBANK, AND CLINICAL TRIALS NETWORK

Registry flyer NLR 151.jpgHave you ever asked, “Who gets alopecia areata?” “How did I get it when no one in my family has it?” “Is it related to another disease?” “What are the chances my children will get it?” “What is the chance that my alopecia areata will turn into alopecia areata totalis or alopecia areata universalis?”

The Alopecia Areata Registry, Biobank, and Clinical Trials Network is designed to answer those types of questions. The more people who participate in the Registry, the more questions we can answer and the more resources we can provide for researchers and pharmaceutical companies to advance more studies and possibly find a treatment for this disease.

If you are new to alopecia areata and just got your first patch, please register. If you have alopecia areata universalis, please register. We need everyone so we can have the most comprehensive and validated resource for scientists to use to make new discoveries about alopecia areata. This registry will be the base of any future clinical trials to develop a treatment for alopecia areata.

View Current Registry Progress Report as of May 2013 here>>>> 

How to Register?  Call Joyce at 713.794.1442 or email her for more information on how to register.   

How was this registry created?

Initially funded since 2000 by The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), one of the institutions in the National Institutes of Health (NIH), the government provided over six million dollars to establish the registry and gather initial information and samples.  The project described was supported by Award Number HHSN268200682279C from The National Institute of Arthritis and Musculoskeletal and Skin Diseases/National Institutes of Health.  Federal funding for the registry ended on March 31, 2012, at which time NAAF inherited it.  In helping the registry to get underway, NIAMS indicated its strong commitment to research regarding alopecia areata for which we will always be grateful.

Why is this registry important?

Have you ever asked, “Who gets alopecia areata?” “How did I get it when no one in my family has it?” “Is it related to another disease?” “What are the chances my children will get it?” “What is the chance that my alopecia areata will turn into alopecia areata totalis or alopecia areata universalis?” 
The registry is designed to answer those types of questions. The more people who participate in the registry, the more questions we can answer and the more resources we can provide for researchers and pharmaceutical companies to advance studies and possibly find a treatment for this disease. Genetic samples collected by the registry have already advanced our genetic research to new levels!

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 research samples from the most informative families with the disease, catalogue, and store information on the patients in a central database, and make this information available to investigators interested in studying the disease.

The disease registry does not conduct the research itself, but it facilitates research by all investigators who need 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 disease registry is 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 research, and it enables investigators to pursue promising research directions. A disease registry is like the pint of water used to prime a pump that can then deliver gallons of cool, fresh water.

How Does the National Alopecia Areata Registry Work?

The National Alopecia Areata Registry is located at five sites across the United States where patients are examined and registered, and blood and tissue samples are taken when appropriate. The samples and data are sent to Houston, Texas, where they are collected and stored by the Principal Investigator. A Steering Committee made up of key members of the Registry oversees the functions of the Registry and determines the distribution of material to appropriate investigators. NAAF’s CEO serves on this Steering Committee.

Where Can Patients Be Seen?

The sites of the registry and the senior investigators at each site are as follows:

  1. University of Texas, Houston, Texas, MD Anderson Cancer Center
    Madeleine Duvic, M.D., Principal Investigator
  2. University of Colorado Health Sciences Center, Denver, Colorado
    David Norris, M.D., Co-Principal Investigator
    Richard Spritz, M.D., Consultant
  3. Columbia University, New York, New York
    Angela Christiano, Ph.D., Consultant
  4. University of Minnesota, Minneapolis, Minnesota
    Maria Hordinsky, M.D., Consultant
  5. University of California, San Francisco, California
    Vera Price, M.D., Consultant

How Does the Registry Facilitate Research in Alopecia Areata?

A well-organized and well-run registry facilitates research in alopecia areata and maximizes the effectiveness of investigation by assuring that

  1. Uniform diagnostic and classification criteria are applied to patients studied.
  2. Fair access to patients and tissues are provided to all credible investigators with well-conceived projects, without regard to possible scientific overlap among projects.
  3. Standardized and uniform information are available on each patient. (Everything is coded so no ones identity is ever revealed.)
  4. Patient studies are coordinated with studies in known animal models, which greatly enhances the effectiveness of the overall research effort in alopecia areata.

What Type of Research in Alopecia Areata is Facilitated by This Registry?

Material collected by the registry greatly facilitates studies of the genetic basis of alopecia areata, the immunologic mechanisms of alopecia areata, basic hair biology related to alopecia areata progression and response to treatment, and neurobiology and angiogenesis related to alopecia areata. Clinical trials and better understanding of disease subsets are also expected outcomes of the alopecia areata registry.

How to Participate in The Registry?

You can register online or at any of the five registry sites.

The registration process is simple. You complete a screening questionnaire called the Short Form, which provides the registry with both epidemiological and statistical information about alopecia areata. You can complete this form directly online or you can download the form, fill it out, and mail it in to the address that is right on the form.

We also encourage everyone to complete a Quality of Life questionnaire. The registry personnel know that this life-altering disease can affect your life as deeply as a life-threatening disease. They want to put together the information they gather from this questionnaire in order to approach health insurance companies for better coverage. Your name will not be listed on any of this information.

If you want to have a Short Form and Quality of Life questionnaire mailed to you, please call the Clinical Coordinator at Joyce S. Osei at (713) 794-1442 or email the Clinical Coordinator at JSOsei@mdanderson.org. You can then mail or fax the forms back (again, the proper addresses and contact numbers are right on the Short Form). It is important to answer all of the questions, including those about other diseases, and to state whether affected family members are on your mother’s side or father’s side of the family.

The Short Form has questions asking about the “proband” in your family. The proband refers to the first affected person in your family who registered. If you are the first or only person registering, you automatically become the proband and do not need to fill that in. We connect families in the computer database by this information, so it is important for you to list any proband if you know that someone in your family has registered before you.

The second part of the Registry is optional. It involves completing a longer questionnaire called the Long Form, traveling to one of the participating sites (Houston, Denver, Minneapolis, New York, or San Francisco), having a brief skin exam, and donating blood for genetic and other research. The registry cannot pay for any travel expenses, but there is no charge for going to one of the sites and participating in the second part of the Registry.

 

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has funded the National Alopecia Areata Registry since 2000, providing over 6 million dollars to establish it and to gather initial information and samples. Federal funding for the registry ended March 30, 2012, and now NAAF will continue to maintain the registry. The registry funding by NIAMS indicated its commitment to advance research regarding alopecia areata. The registry has created an enormous opportunity to advance basic, clinical and translational studies in alopecia areata. It also provides an essential resource for all investigators interested in studying alopecia areata and stimulates opportunities for additional research support from federal and private sources.

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