The National Alopecia Registry: To Track Persons With AA or Find a Cure?

Soooooo, I filled out all of the paperwork for the registry for both kids and mailed it in. Next, I received emails regarding taking each kid to San Francisco for blood work, etc. I had a few questions and emailed the registry. It was very frusterating when I kept getting generic replies thanking me individually for signing up for the registry. Then after many email attempts, finally I learned that I would have to pull each kid out of school to go to San Francisco and have the blood work done. This is impossible. It's puzzling how our research monies donated are spent at the registry. Has anyone else had a frusterating time trying to work with the registry?

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Permalink Reply by Lynn AKA Mom of 2 w/AA on January 9, 2009 at 9:31pm
Hello there Linsey! It's nice to receive word from you. Have you conceived yet? I've said a few prayers for you over the past couple of months. I hope all is well and that you are happy :o) Your wedding photos are sooooo beautiful, and I could only hope my children will have such a beautiful wedding. My son was labled a gifted learner and goes to a private school now. He is currently playing basketball on a Baptist Church League, and having a lot of fun with that. My daugther goes to public school (she wants to stay in the same school as all of her friends) and she reiceived all As & two Bs on her last report card. She recently ran a track race with her P.E. class and was the first girl to come in first place! She was sooooo proud of herself, and I was sure proud of her too & let her know that for sure! Their AA is still naturally concealed (THANK GOD!) Sure, it would be great if you could send me contact information, regarding your local registry person. Maybe, she can give me an appropriate email address or name & number of the San Francisco representative. I'm sure the kids would have no problem having their blood drawn to someday find a cure. Take care & thanks again for responding :o)
Permalink Reply by BaldGirlsDoLunch.org on January 10, 2009 at 8:15pm
HI Linsey-

This topic is of great interest to me because it's a continuing source of confusion and misinterpretation. In the attempts to educate and clarify as best we can, I wonder if you can specify what you were told about "where they are in the research and how long until it is published." I believe there are some life-style questions that have confirmed previously unsupported evidence of the psycho-social toll of AA.

thanks for details you can provide. My recent attempts for specific information from the clinical coordinator have been ignored.
Thea
Permalink Reply by Nants the Rebellion Dog on January 9, 2009 at 7:31pm
I filled out the paperwork and submitted it online. I said I did not want to have blood drawn or travel. They sent me back a very nice e-mail saying I'd have to have blood work done, but it could possibly be done by a local physician. I wanted to join so they know how many people actually have it, but I certainly am too busy to take a day off and travel to SF! I e-mailed back and said I'd be willing to have blood drawn locally and asked them what to do next. That was a few days ago and I've heard nothing back.
Permalink Reply by Lynn AKA Mom of 2 w/AA on January 9, 2009 at 9:39pm
Hello there Nants! I'm glad that you too found the time to participate with the registry. I know they have different offices around the U.S. I guess the better option for us, would be for you and the kids to go to their regular dermatologist & have the blood drawn, then have the dermatolgoist office mail it in to the registry, as Linsey has done in the past. Hopefully, you nor anyone else will have the same hassles I've had with the registry :o( Good luck with everything! You wouldn't believe it, but, at the current moment, I've got this "Big Kitty Cat" (my daughter's cat) who keeps walking back & forth past my computer monitor :o) It is getting difficult to write. I'd better give this cat some attention ~ geez, she is a spoiled cat ;o) Take care & best wishes to you.
Permalink Reply by rj, Co-founder on January 9, 2009 at 11:21pm
In response to this video post, Thea Chassin of Bald Girls Do Lunch posted a couple of comments about the purpose of the National Alopecia Areata Registry, which you may find helpful.
Permalink Reply by Lynn AKA Mom of 2 w/AA on January 10, 2009 at 12:27am
As always: Thanks R.J. :o)
Permalink Reply by BaldGirlsDoLunch.org on January 15, 2009 at 12:34pm
Thank you Kerri for updating us.

Please clarify: wasn't the Quality of LIfe Questionnaire a required component of the Tier 2 data collection? Or are you referring to something unique ?
What does "validation" of the Questionnaire mean?
Is there a process currently place to evaluate the Questionnaire responses and publish a report?

thank you.

Thea
Permalink Reply by BaldGirlsDoLunch.org on January 20, 2009 at 5:22pm
Hi Kerri-

Thank you very much.

Is there a time table in place for the completion of panel reviews and patient candidate selection? Can you say why the patient subset is only 10 cases?

thea
Permalink Reply by BaldGirlsDoLunch.org on March 23, 2009 at 9:05pm
Hi Kerri-

Can you please shed light on a new bit of information I came across which summarizes the findings of the genetics article linked from Sciencedirect.com in your note above?

The May 2007 NIAMS Spotlight on Research 2007 says in summary about that genome study :" Another observation is that people with immediate family members with alopecia areata have 10 times the normal risk for developing the disease themselves. "
So is that the approximation of a lifetime chance of having any form of AA at 1.7% x 10 = more or less the 20% chance usually cited for close relatives?


And, are there any updates since you last wrote about the validation procedures of the Quality of Life Questionnaire?


thank you,
Thea
www.BaldGirlsDoLunch.org where I like blogging with up to date medical topics for the alopecia community.
Permalink Reply by Amanda on January 21, 2009 at 11:12pm
It's interesting to hear that they will send you the tubes so you can do the draw locally, I know I looked into registering a couple years ago but saw there would be travel and decided that would be too expensive so didn't. I will definetly do it now. Thanks for all the info!
Permalink Reply by Lynn AKA Mom of 2 w/AA on January 22, 2009 at 9:59am
Hi Amanda! Glad to learn you are participating too. I called the gal over at the Houston Registry, and she is sending me more paperwork, as well as the tubes. The kids are sooooo very selfless, in that they both agreed to donate their blood if it will help other people! I'm very proud of those two. Now, I am just waiting to receive the tubes, etc. It was either in this discussion or another, where Lindsey provided the name & number to the gal in Houston. When I telephoned the Houston office, I had a long conversation and was surprised to learn that research is pointing to the environmental causes, in that occurrences of AA are linked to changes in our earth's environment. Also, she had never heard of a siblings both getting AA within the same month. The kids didn't go through any stress, nor were they around any environmental hazzards. Anyhow, that was what I learned. Take care!!
Permalink Reply by Barbara Pastor on January 22, 2009 at 10:17am
Lynn, My daughter 12yr. just got diagnose with alopecia in 5 spots of her hair the size od a dime.Please tell me more about the iodine approach.

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