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More encouraging registry information...
Hi guys, if you've read all these posts, you know that there has been some discussion about the purpose of the National Alopecia Areata Registry and how our information and blood samples will be used. I went back and read more carefully myself on the MD Anderson site.
My purpose in posting this particular blog is not to cause a reaction or upset anyone who may disagree with what I am writing. I just feel that there is signifcant reason to believe that the registry will be doing more than just gathering information. I say this because I am reading more and more information from credible sources about the registry being used for research on the causes of Alopecia and that this research may lead us to a cure. Here they are....
This quote is from a the National Alopecia Areata Registry group on Facebook, and the creators of the group appear to be involved directly in the registry...
"The National Alopecia Areata Registry (NAAR) is an organization sponsored by the National Institutes of Health (NIH) and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The NAAR is comprised of five sites: the central Houston, TX site located at M. D. Anderson Cancer Center and sites in Denver, CO, New York, NY, Minneapolis, MN, and San Francisco, CA.
The Registry will be a resource of clinical data and selected biological research samples, stored in a central repository and available to investigators studying the disease. The Registry does not offer treatment for alopecia areata. But, in collecting genetic and environmental factors that predispose for alopecia areata, we may develop better medications, new clinical trials, and perhaps a cure."
And this quote out of the NAAF Spring Newletter, Page 10, from Dr. Maria Hordinsky, Chairman of the Dept. of Dermatology at the University of Minnesota, and NAAF Sciencitic Advisory Council Member...
"....a National Institutues of Health-sponsored registry focused on collecting and disseminating blood samples and patient history information for research purposes. Studies made possible by the registry are looking for the genes associated with alopecia areata, an important step toward improving understanding of the disease. Researchers who are trying to understand the course of the disease and those searching for new cures may also use the database to find patients to participate in clinica studies. "
My purpose in posting this particular blog is not to cause a reaction or upset anyone who may disagree with what I am writing. I just feel that there is signifcant reason to believe that the registry will be doing more than just gathering information. I say this because I am reading more and more information from credible sources about the registry being used for research on the causes of Alopecia and that this research may lead us to a cure. Here they are....
This quote is from a the National Alopecia Areata Registry group on Facebook, and the creators of the group appear to be involved directly in the registry...
"The National Alopecia Areata Registry (NAAR) is an organization sponsored by the National Institutes of Health (NIH) and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The NAAR is comprised of five sites: the central Houston, TX site located at M. D. Anderson Cancer Center and sites in Denver, CO, New York, NY, Minneapolis, MN, and San Francisco, CA.
The Registry will be a resource of clinical data and selected biological research samples, stored in a central repository and available to investigators studying the disease. The Registry does not offer treatment for alopecia areata. But, in collecting genetic and environmental factors that predispose for alopecia areata, we may develop better medications, new clinical trials, and perhaps a cure."
And this quote out of the NAAF Spring Newletter, Page 10, from Dr. Maria Hordinsky, Chairman of the Dept. of Dermatology at the University of Minnesota, and NAAF Sciencitic Advisory Council Member...
"....a National Institutues of Health-sponsored registry focused on collecting and disseminating blood samples and patient history information for research purposes. Studies made possible by the registry are looking for the genes associated with alopecia areata, an important step toward improving understanding of the disease. Researchers who are trying to understand the course of the disease and those searching for new cures may also use the database to find patients to participate in clinica studies. "
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Comment by Carol on June 3, 2008 at 8:45am
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Is this something you are contributing to? I think it's wonderful that so much research is now being done! Genes are just one of the types of research they are doing. Scientists are also looking into immunology and are testing new drugs all the time. They have found a way to grow human hair on mice too. Because it is so difficult to pinpoint the cause it is also difficult to find the cure. I think this is something more people should participate in for sure!
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Comment by Kelly on June 3, 2008 at 1:12pm
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Hi Carol, yes, I am in the process now of going through the 2nd tier registration. That means that I registered on the website and was choosen to continue on to the second step which is to visit a doctor to confirm my type of alopecia, do a family history, etc. and also get blood drawn. THis all goes to MD Anderson Cancer Center in Houston and will stay on file for anyone interested in using it for further research studies. It will also be used to make a case to insurance companies to begin covering our wig expenses.
I have heard about the mice growing hair - pretty amazing. Yes, autoimmune disorders are such a mystery to the medical community in general - look at something as simple as allergies, so common and yet there's no cure yet.... I posted the registry info here to do exactly as you said, get more people to participate. Thanks for your upbeat comment; We need all the good news we can get!! :o)
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Comment by Ev on June 13, 2008 at 1:10pm
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Hey I did this last December in San Francisco. Where are you doing it? I know that there are some sites in Texas as well.
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Hi Ev, I did mine through MD Anderson, but I went to a dermatologist here in Mesa as well as a blood lab here. I'm glad to hear you did it to. :o)
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Don't think we'll hear about our samples. I just figured I'd have to accept that. I decided that it's enough to know I can make a difference by participating, but may never know what exact difference I made. I believe if there is ever a cure we can feel a sense of purpose and pride in having contributed to it by participating. :o) Thanks for your comments Bogie.
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