The first ever database of hair loss conditions has been created to compare and analyze Alopecia Areata sufferers, but time is running out, and they need your participation...
The University of Texas, Anderson Cancer Center has received a grant in the amount of $2.7 Million to create the first ever database collecting information from Alopecia Areata sufferers. As part of the requirements for the grant, they have five years to gather information from 5,000 qualified individuals with Alopecia Areata. They are currently 2 years into the 5 year trial, and only have 600 qualified registrants. The good news is, the response has been good, with over 2,000 Alopecia Areata sufferers applying.
What is the Alopecia Areata Registry?
In a nutshell, the first step in conquering a condition is to understand it. The first step in the scientific process of understanding things is to gather a group of qualified individuals and compare them, first to eachother, then to others without the condition. The registry looks at individuals with Alopecia Areata who also have a genetic history (other family members) of the condition. If you have Alopecia Areata and so does your mother, daughter, sister, brother, grandparent .... or if any of them have experienced it in their lifetime, you are the especially qualified for this registry. Additionally, anyone with Alopecia Areata and *no* family history of it is welcome. They will be analyzing the genetic predisposition in this research study, as well as comparing those with it, to those without it.
To gather the large amount of information needed to perform a genetic linkage analysis, M. D. Anderson will create a national registry of alopecia areata patients and their family members. The registry, sponsored by the National Institute of Arthritis & Musculoskeletal & Skin Diseases (NIAMS), is designed to collect research samples that will help determine the genetic components of alopecia areata. It is a tremendous opportunity to create a well-organized resource that will help researchers develop new treatments, diagnostic tools and prevention measures. Patients identified through the study will be first in line for clinical trials of any new therapies.
First you just need to fill out a form with your history. They would like to know what kinds of medications you've taken, what environments you've lived in, basically lifestyle conditions. This form covers most of that info. After you've submitted the form, researchers will review it and decide whether your situation can be used for the registry database. At that time you'll be notified that you've just contributed to helping find a cure for this condition!
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. The diagnosis must be made by a dermatologist with expertise in alopecia areata. If the diagnosis is unclear, a skin biopsy from the scalp or buttocks may be required. It is the patient's responsibility to cover the cost of a biopsy. Children under the age of 18 must be accompanied by a parent or guardian. The study does not require a hospital stay or follow-up visits. No treatments will be administered. However, members of the registry will be the first to benefit from any advances in diagnosis, treatment and prevention.
But they need more!
There are two tiers of participation in the registry. First a form is requested to be filled out. Once the researchers have decided that you and your family member qualify, skin and blood samples will be needed. This is very important to completing the research, so please be willing to help out in this area!
Where do I sign up?
Send an email requesting information to alopeciaregistry@mdanderson.org. You can also call Kathleen Hunzicker, M.D., or Joan Breuer-McHam, Ph.D., at (713) 792-5999.
