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How to Enroll

This research Registry has two parts: First Tier Registration and Second Tier Registration. Any individual or family member with a documented history of AA who lives in the U.S. may participate in the First Tier Registration.

There is no exclusion by age, sex, or ethnicity. Both children and adults are encouraged to register.

First Tier Registration

Eligibility Requirements

  • Adults and children who have been diagnosed with one of four types of alopecia areata (AA): Alopecia Universalis (AU), Alopecia Totalis (AT), Patchy Persistent AA, or Transient Mild AA
  • Family members of alopecia areata patients (related by blood), preferably siblings, parents and multiplex families
  • Controls are non blood-related individuals who are unaffected and do not live in the same household with alopecia areata patient

Participants fill out the four-page Short Form Questionnaire: 

The Short Form is also available at MD Anderson Cancer Center and the other participating sites. Participants do not have to travel to any sites or be seen by any doctors to register in the First Tier.

Quality of Life Questionnaire: Alopecia Areata Symptom Impact Scale (AASIS)

First Tier participants with AA will also fill out the two-page Quality of Life questionnaire (AASIS) that will help us understand how this disease has affected their lifestyle. We hope to use this information so that appropriate health insurance compensation can be lobbied for, and to educate the public about alopecia areata.  Also, all First Tier participants will be requested to provide saliva sample.

Filling out this questionnaire is voluntary. You do not have to fill it out to participate in the Registry.

Second Tier Registration

A committee of alopecia areata specialists, the Steering Committee of the Registry, will review these questionnaires and decide which participants may continue to the Second Tier Registration. Because of research costs, Second Tier registration is limited to 3,100 individuals as listed below:

  • Multiplex family –families with three or more individuals diagnosed with alopecia areata
  • Children with more severe forms of alopecia such as alopecia universalis or totalis
  • Twins -one or both twins with alopecia areata plus their parents
  • Adults with AA/AT/AU to provide two punch scalp biopsy samples, 6mm each and approximately 4 table spoons blood samples at one of the participating sites (in Houston, Denver, Minneapolis, New York City and San Francisco).  The skin samples and the blood samples will be sent to Dr. Angela Christiano at Columbia University, New York.  The samples will be used to find genes expressed in Alopecia Areata.  This optional sub-study is only for adults.
  • Controls/Unaffected Individuals: non blood-related individuals who are unaffected with alopecia areata and do not live in the same household with alopecia areata patient.

This includes a 27-page Long Form and a physical exam by a dermatologist. The Long Form will be sent to Second Tier registrants, or they can pick one up at a participating site. The Long Form has a patient part and a physician part. Registrants will fill out the patient part at home. It has a comprehensive contact list and patient and family histories. We ask that registrants obtain past medical histories, blood work, and pathology reports.

Registrants will bring the Long Form to the doctor’s office, where there will be a physician exam, photographs (taken with a standardized digital camera system and stored for documentation of scalp and/or body disease), blood samples for DNA, sera and lymphoblast lines and immunogenetic marker studies, and a physician-documented family pedigree of alopecia and autoimmune diseases.

This is an investigational study. An unlimited number of patients who meet the criteria for the study may participate in the First Tier Registration. About 4,500 patients and their family members will participate in the Second Tier Registration. This number of patients is limited by funding for laboratory and research work.

Controls Questionnaire

Fill out the Long Form Questionnaire to sign up for the National Alopecia Areata Registry as a control subject.

Family Participation

The participation of unaffected family members in the Registry helps us tremendously by giving important epidemiological and medical data that links alopecia areata to other diseases. However, it is the responsibility of the primary registrant to contact other family members and friends to enroll them in the study. Each registrant must individually consent to participation in the Registry before we can make further contact. Any family member, affected or unaffected with alopecia areata, may register directly on this website.

Confidentiality

All blood samples, saliva samples and information from the registrants will be coded so that the patient's identity is known only to select Registry staff. This means that all information collected in this study will be reported in numbers, so that no person or family can be identified. If a study is published in a medical journal or book, no names will be used.

Investigators who are interested in studying AA will apply to the Registry Steering Committee to use the information and the samples that are collected for their research studies. All blood will be stored at MD Anderson Cancer Center in a laboratory with freezers dedicated to the Alopecia Areata Registry. The samples may be used now or in the future for research purposes. If data and/or DNA are released to outside researchers, no identifying information will be included, so that no person or family can be identified by the research group requesting the information. If a registrant wishes to leave the Registry and requests that we destroy the blood samples, we will make every effort to trace the specimens and destroy them, but this may be difficult after they are coded.

All participation in the Registry is voluntary. Registrants may change their mind and withdraw at any time, with no consequences to their health care or employment. At a future time, a representative of the Registry may contact the registrant to ask whether there is interest in a future study. At such a time, the registrant may agree to participate or decline to participate. Failure to participate in a future study will not affect the quality of health care or employment. The collection of information for this Registry is in compliance with The Privacy Act System of Records Notice, number 09-25-0220, as cited in the Federal Register Notice issued in Volume 62, Number 66, pages 16596 to 16602, dated April 7, 1997.

Financial Responsibility

The Registry offers no treatment. Regular medical care and treatment for alopecia areata is the responsibility of each individual. This Registry does assume the responsibility for any cost associated with drawing the blood at MD Anderson Cancer Center and for shipping the blood samples from other sites. If a registrant wishes to receive treatment at MD Anderson Cancer Center, that individual must register as a new patient in the hospital and be responsible for all medical and treatment costs.

If a patient is interested in this Registry, but cannot be seen at any of the participating sites, the patient is responsible for the costs of being seen by a private dermatologist and having blood drawn. Our Registry will pay only for the shipping of blood samples and saliva samples to our central location. However, we will try to refer a patient to local dermatologists who will facilitate the registration process.

The Registry is limiting Second Tier participants to those individuals who can be seen in one of the participating sites. There will be exceptions. The purpose of seeing patients in the sites that are part of the Registry is for quality control of the data. Better control will lead to better information, helping us seek better treatments, and someday, a cure.


© 2014 The University of Texas MD Anderson Cancer Center