Has there ever been a questionnaire by patients?

Its 6.20 am, Iv been awake since 5.10 with this idea.  Has there every been a comprehensive questionnaire by Alopecia sufferers?  What I mean is from a sufferers point of view and not from the medical point of view?

 

Iv been sitting here thinking of what would go into the questionnaire and I have two pages of brainstorming at present.  This would cover things that maybe a specialist wouldnt notice, and could hold the link and thus a maybe an insight to one day find a cure.

 

I know in America a Cancer Center has run a registry for the US sufferers but Iv never come across a world wide study in the form of a questionnaire.

 

I think the answer to Alopecia is in our commonalties if we can find it.

 

Id love to hear your ideas?

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Permalink Reply by BaldGirlsDoLunch.org on February 23, 2010 at 9:41am
yes, the NAAR, National Alopecia Areata Registry based at MD Anderson in Texas collects data. It was funded to collect data. What confuses the alopecia community is that this registry was never funded to conduct research. it is a data collection only. It makes the DNA and patient surveys available to qualified researchers should they want to use the blood samples and patient responses. NIH funding for this registry is just about over.

One of the latest bits of information using data in the registry is this one.

Thea
www.BaldGirlsDoLunch.org
Where we work hard to make our blog the go to place for alopecians to find original resource links to published research about alopecia areata.
Permalink Reply by Patricia Hutchings on February 23, 2010 at 11:48am
As far as Iv read on their website, that is only for the USA. They collect blood samples, and sounds very much on the side of the medical profession. But I might be wrong!
Permalink Reply by BaldGirlsDoLunch.org on February 23, 2010 at 11:57am
yes, it is for the USA.

The project was created with two general components. Primarily to collect DNA via blood samples. Secondarily providing a "lifestyle questionnaire". Collecting data is one thing. Knowing how to analyze it ( assuming the methods are reliable) is a whole other thing.

Thea
www.baldgirlsdolunch.org
"It's not about a cure. It's about the core...of your values."
Permalink Reply by Chris Jeffer on March 17, 2010 at 1:08pm
Great idea - want to get one going together? As I am not a medical professional, I would be interested in doing it from a holistic angle - ie: relationships, behaviour, emotional paterns, exercise, diet, etc. How do you feel about that?
Permalink Reply by Chris L on March 17, 2010 at 5:53pm
Hi Patricia

I've been thinking the same and posted something similar a few days back. I even found my specialist didn't even ask anything.

I would be really happy to help out to create such a questionnaire! For work, I use SurveyMonkey.com to create and make available questionnaires via email/web link.

Look forward to more discussions on this!

Regards


Chris
Permalink Reply by Chris Jeffer on March 17, 2010 at 6:49pm
Hey Chris,

I was thinking about what you said in one of your other posts about having visited Australia before you had alopecia. How long after leaving Australia did you start to lose your hair? Was there anything that might have been associated with this hair loss such as stress or sadness or any trauma?
Permalink Reply by Chris L on March 18, 2010 at 3:21am
Hi Chris

when I returned from Australia I set up my own company and have been running that for the last 7 years. My hair loss started 1.5 yrs ago. My beard hair started, the my head, then complete body. I can asssociate it with high levels of stress across almost all areas of my life: work, personal, relationship, home etc, tied into that my eating habits throughout that.

Things are much calmer now and I've made changes to my life.

Chris
Permalink Reply by Chris Jeffer on March 18, 2010 at 6:57pm
Great that you recognized this and made changes Chris - well done.
Permalink Reply by Brandy Snap on March 18, 2010 at 5:25pm
A questionnaire is a great idea! If you make it I will take it. :D
Permalink Reply by Reto on April 11, 2010 at 1:55am
I also think a questionnaire is a good idea.
Permalink Reply by Patricia Hutchings on April 11, 2010 at 7:54am
Iv started the questions on hair website to work out the half who dont have alopecia. This way I can see what is important to ask rather then not ask. These people all have healthy hair as far as I know. Once Iv done it there, Or work out how to do it here, I can then start asking here, and see if there is a noticeable difference.

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