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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?
Replies to This Discussion
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Permalink Reply by Lynn AKA Mom of 2 w/AA on -
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)
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Permalink Reply by BaldGirlsDoLunch.org on -
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
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Permalink Reply by Nants the Rebellion Dog on -
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.
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Permalink Reply by Lynn AKA Mom of 2 w/AA on
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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.
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Permalink Reply by rj, Co-founder on -
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.
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Permalink Reply by Lynn AKA Mom of 2 w/AA on
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As always: Thanks R.J. :o)
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Permalink Reply by Kerri on -
Good Morning Everyone,
I hope all is well. My name is Kerri Fernandes and I'm a research interviewer w/ the NAAR. 1st I'd like to say if anyone ever has any questions please feel free to contact me directly on our toll free line @ 1-866-837-1050. We receive so many emails a day it's hard to answer questions on a personal level. Nants- Your package will be arriving next week. Lynn- I need more personal info to track your registration but if your still interested in participating or have any questions please feel free to contact me. Thea- That’s very interesting, we just had a meeting this morning regarding the validation of our "Quality of life questionnaire" which about 1500 people have completed.
1st id like to say the registry is in the "Observational stage" meaning that we're to collect as much data as possible before we're allowed to conduct the majority of our study. One of our sites, Columbia University has begun a Genetic Linkage study which basically traces the lineage of alopecia throughout families. We have associated 4 chromosomes with AA and are currently working on isolating the specific genes. We also just submitted a paper regarding twins and AA using both monozygotic and dizygotic twins, The Registry has the largest twin database in the nation :)
We used 50 sets of twins, 19 monozygotic- of which there was a 42% concordance rate. Revealing a strong environmental aspect to our already determined hereditary disease. We are also going to begin a large genome wide scan on about 1500 patients as an associative study. When the papers are published I will send a link. The twins’ paper should be available in a couple of months to the public. We have reached a point in our study where our funding has become based on patient participation. We have 8000 registrants and less than 5 people who actually review these patients. We strongly focus are time on those patient's to which we feel are receptive hence the stationary emails. The registry is focusing on patient's with severe AA, families, twins, children... etc.... We are no longer accepting participation from transient patients. We really need as many patient's t donate they're blood samples as possible not only to keep our funding, but to create a more conclusive study. I encourage all patient's interested or those w/ questions to contact me by phone on our toll freeline. Thanks for your time. and I hope this answers your questions.
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Permalink Reply by BaldGirlsDoLunch.org on
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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
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Permalink Reply by Kerri on
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Thea,
The QOL was given to all patient's participating in the 2nd tier. Unfortunately, only about half actually completed it.
Subjects responded to a questionnaire regarding their quality of life, well being and health status and aked to fill out assessment tools such as the Skindex-16, DLQI(Dermatology Life Quality Index) questionnaire and the Brief FNE(Fear of Negative Evaluation Scale). These questionnaires were validated for other skin conditions but not for AA as a chronic condition.
Our first step will be to demonstrate content validity of the NAARSS (NAAR Symtom Scale) by identifying common symptoms related to AA. Expert reviews suggest that symptom items collected in the NAAR are representative of symptoms typically associated with AA. We will formalize this opinion by administering a survey to a panel of ten dermatologist/clinicians, in which they will rate the relevance of each symptom or symptom-related item in the NAAR. The panel will evaluate the content validity of the items in the NAAR database (Lynn, 1986).Concurrent with data collection from the panel of expert members, we will use the registry data to select candidate items for inclusion. We will randomly select half of the patients in the NAAR as a testing sample. We will ensure that patients along the spectrum of AA severity (very mild to worst) will be represented in this sample. The other half of the sample will serve as the cross-validation sample
In response to the Food and Drug Administration guidance in the use of patient-reported outcomes (Food and Drug Administration, 2006),we will perform cognitive debriefing. Using the preliminary version of the NAARSS identified from the previous step, we will conduct cognitive debriefing interviews in a subgroup of 10 AA patients. This will enable us to assess the NAARSS ease of understanding, clarity, conciseness, and to verify the appropriateness of its symptom items. Also, the patients will be asked whether there are any additional important symptoms that had not been included in the questionnaire.
Psychometric Validation of the NAARSS:
In this step, we will examine how the NAARSS performs psychometrically using the cross validation sample from the registry. We will calculate the internal consistency of the NAARSS using Cronbach’s alpha coefficients (Cronbach, 1951). Coefficients of at least 0.70 are deemed acceptable. We will demonstrate construct validity by exploring the factor structure of the NAARSS (Harman, 1967) . Known-groups validity will be shown by examining differences in NAARSS scores by disease severity or by using other agreed upon clinical variables. Criterion-related validity will be performed by correlating NAARSS scores with other related measures. These other measures will be defined by the expert members of the panel.
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Permalink Reply by BaldGirlsDoLunch.org on
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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
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