Alopecia Areata Registry, Biobank & Clinical Trials Network
The Alopecia Areata Registry, Biobank & Clinical Trials Network (Registry) is an organized network of centers that identify and register patients with alopecia areata. Relevant research samples are collected and information is catalogued and stored in a central repository. The Registry is a powerful resource of clinical data available to investigators studying the disease and pharmaceuticals developing treatments. The Registry does not offer treatment for alopecia areata. However, in collecting data about the genetic and environmental factors that predispose for alopecia areata, we hope to develop effective treatments and a cure.
IMPORTANCE OF THE REGISTRY
The Alopecia Areata Registry, Biobank & Clinical Trials Network is the largest collection of alopecia areata data and DNA samples in the world. NAAF serves as the trusted custodian of this centralized database and store of well-characterized samples, available to investigators studying the disease and pharmaceutical companies developing treatments. The Registry is designed to answer epidemiological questions and provides information for investigators to find effective treatments. The Registry is an instant network for clinical studies, easily alerting and enrolling patients in clinical trials.
This powerful resource provides an instant network to alert and recruit patients for clinical trials. We are committed to continue its management and funding so we can easily link clinical-trial–ready sites to the patient community, facilitating study enrollment and feedback.
A close relationship with the patient community allows us to easily promote patient involvement in research studies and clinical trials vital to bringing safe and effective treatments to market. We are able to quickly fill studies through many outreach avenues, including: social media; website; mail and email to our database; and the Registry.
JOIN THE REGISTRY – BE PART OF THE CURE
Your data and your samples have immeasurable value. This information enables researchers to study the molecules that make people with alopecia areata unique. Donating your data and samples is an empowering act that makes you a driver of the future of alopecia areata research.
Your data will accelerate the development of safe and effective treatments – 2,500 samples were used in an initial genetic study that discovered similarities between alopecia areata and other autoimmune diseases like type I diabetes, celiac disease and rheumatoid arthritis. We are now targeting existing FDA approved therapies for these autoimmune diseases as potential treatments for alopecia areata because they are known to be safe and effective, fast tracking phase II clinical trials.
To gain a deeper understanding of the complexity of this heterogeneous disease and genetic similarities to other autoimmune diseases, we need over 10,000 well-qualified samples. Together, we can make it happen.
HOW TO ENROLL
Participation in the Registry is a simple two-part process. First Tier Registration involves the completion of 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 by clicking here. You may also be mailed a Saliva Kit with instructions to provide a DNA sample easily obtained from your mouth.
Registrants are encouraged to complete a Quality of Life questionnaire. This disease can have a devastating effect on one’s quality of life and information gathered from this questionnaire will be used to approach health insurance companies for better coverage and the Food and Drug Administration (FDA) for approval of treatments.
Second Tier Registration is limited due to research funding. A committee of alopecia areata specialists will review the First Tier questionnaires and decide which participants may continue to Second Tier Registration. It involves the completion of a longer questionnaire called the Long Form, travel to one of the Registry sites (Houston, Denver, Minneapolis, New York, or San Francisco), a brief skin exam, and a blood or saliva donation for genetic and other research.
THE REGISTRY IS SEEKING THE FOLLOWING PARTICIPANTS FOR SECOND TIER REGISTRATION:
Multiplex Families: Persons with at least three family members with alopecia areata, alopecia totalis, or alopecia universalis.
Children with alopecia totalis or alopecia universalis: To provide a saliva sample as the most severe phenotype.
Identical or Fraternal Twins: One or both twins with alopecia areata, alopecia totalis, or alopecia universalis and their parents.
Adults with alopecia areata, alopecia totalis, or alopecia universalis: To provide two scalp biopsy samples and blood samples. The skin and blood samples will be used to study the genes expressed in alopecia areata. The scalp biopsies can only be performed at one of the participating Registry sites.