Re:Database Creation--Recommendations Please

[Guest guest]

Dear Bobby and Group,

I just got the Database space created by making a file for our

" Websites that link to our EN Group " . In the past that was important,

but now we are easily found on the 'net and I don't need to contact

groups and websites asking for them to add our link. I am sure glad

that phase of our Groups development is over. In the " early days " a

couple yrs. ago it was quite difficult for those with EN to find the

Group. Now one click and you are here. That in itself was a big

accomplishiment for our group.

I think it is important to limit the participants of this new

Database to those who have had several outbreaks of EN. Those who have

had it once or even twice don't see trends yet. You need at least 3

flares to see any direction with regards to frequency, severity and

duration. And by the time you have 3 flares you can be pretty sure you

are " chronic " .

*********

So far this is what I think should be the Database quetions:

Name

email address

present age

Country of State

# of yrs. you've had EN

Asociated disorder (Sarc., Crohn's, Strep etc)/idiopathic

Describe EN symptoms (lumps, malaise,join pain, labored breathing etc)

Over the yrs. has the frequency of your flare ups Stayed the same,

Increased, Decreased, presented No pattern? State frequency past and

present.

Over the yrs. has the Duration of your flare ups Stayed the same,

Increased, Decreased, presented No pattern? Be specific on length of

flares past and present.

Over the years has the Severity of your flare ups stayed the same,

Increased, Decreased, Presented No pattern? Describe severity. Does it

limit your activity? How?

Treatments including meds you take for EN including prescriptions,

bedrest, topical cream, acupuncture, herbs, etc.? List meds and dose

if you take them.

Effectiveness of the treatments you take? Effect on lumps or pain?

Who treats you for EN? Contact info if you recommend them. If you

self-treat, so state

What is medicl person's " speciality " (Dermy, Rheumy, Allergist,

Chinese Med. etc)

Comments

*******

Any suggestions before I start working on the Database? I will give it

a few days for all members with suggestions to give me their input.

This Database is trying to be all incluseive so that we will see if

any trends exist. It will take time to create as well as complete. I

have a friend who is a math PHD and will help me to create a

mathematical model is one exists once the data in in. Perhaps two or

more trends exists and we will be able to tease them out. I don't

think any such all inclusive study has ever been undertaken, and it

may indeed add significantly to EN research.

If this is ever published, be assured that identifying info will NOT

be included. Participating members will be assigned a number so that

their identity will be protected.

Wishing Everyone A Happy Day!

Love,

[Guest guest]

Dear ;

This looks good sop far! I agree that the EN group is now straightforward to find - look at the number of new members on such a regular basis!

I know utterly nothing about how to conduct a viable medical questionnaire so please keep that in mind when considering my suggestions/ideas! I think it's a good idea to separate the frequency/duration/severity questions. In my case the frequency has been unpredictable over the 20+ years, the duration has shortened but the severity has increased! Go figure! Anyway I'm tyring to figure out of the treatment question also should be separated in some way. I'm not sure exactly how but perhaps details as to number of times treatment has been tried, improvements noticed and which symptoms respond. One of the difficulties I've found is that medicines (topical, taken or otherwise) are called by different names in different countries. I tend to know the brand name rather than the chemical composition. Do you want to question for ALL drugs taken (which could be massive!)? And for those of us who have been treated over a long time have found that the drugs and specialists have changed. One other thought - my first diagnosis, treatment, etc was in America (NJ, CA, then CO) before I came here to Sydney. Do you think that is of any significance (the locale I mean, not my travels:) !)

I am TRULY not trying to be difficult. I greatly appreciate that what you are attempting is ground breaking and potentially critically important. I guess I want all your efforts to have the highest chance of being of value. I do wish you the very best with this project.

Hope you are enjoying your remission and not pushing too much!

Bobby

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