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Compiling/Tracking Data

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Compiling/Tracking Data

Postby lisac » Tue Dec 30, 2003 09:41 am

by lisac (247 Posts), Tue Dec 30, 2003 09:41 am

I wonder if it's possible to have one place that tracks everybody's PE pregnancy history, current status & outcome.

For ex.

Jane Doe --12/10/01 severe PE 25 wks (loss)
09/17/03 no PE --full term 37 wks
EDD--05/25/04

I guess it would be a way to track recurrence/success in a non-scientific way. It would help, having had a loss, to see that somebody who had PE early on went on to have a baby (even though some do not). I know of a few specific women here who have had that outcome, but it's hard to track everybody. This may be a difficult thing to compile, but it was just a thought. Maybe it could be done w/o using people's name if that's an issue.

Thanks,
Lisa


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Re : Compiling/Tracking Data

Postby lisac » Tue Dec 30, 2003 09:54 am

by lisac (247 Posts), Tue Dec 30, 2003 09:54 am

By the way, I'm willing to help work on this & put it together if you think it would be appropriate/useful to have.

Lisa
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Re : Compiling/Tracking Data

Postby ileana » Tue Dec 30, 2003 10:19 am

by ileana (1010 Posts), Tue Dec 30, 2003 10:19 am

Lisa,

We are actually working on something similar. We did not think about making it a public database, we are thinking about a set of medical surveys that will be used by doctors to create meaningful reseach data...

Privacy is a very big issue these days, and I don't know if we will ever make this info public on the Internet, but we might think in which way we can make this available to registered members.

As always, we would very much appreciate any help. Right now we are more in need of technical help (Oracle database development, web page design, technical aspects of creating Internet content). Anyone that has such skills and time to help is more than welcome to join us.

Email me at ibalcu@dulcian.com or/and Anne if you are interested in helping with this.

And of course, we will need everyone to add their contact information in the PF Registry, so we can contact you as soon as this survey will be ready.
http://www.preeclampsia.org/register.asp

The registration is free.

Last, but not least, such initiatives can be accomplished and accelerated if we had enough money to hire help, buy hardware and software, etc. so anyone can contribute by donating to the Foundation.
https://fp7.adhost.com/preeclampsia/donate.cfm



Ileana 33
Angel stillborn 24w p-e 2/17/03
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Re : Compiling/Tracking Data

Postby lisac » Tue Dec 30, 2003 10:36 am

by lisac (247 Posts), Tue Dec 30, 2003 10:36 am

Hi Ileana,
It's great that you're putting that together. I understand the privacy issues. Hopefully, the general stats can be published, though. I'd love to know how many here have recurrence, how many have had success after a loss, how many have early onset PE.
I wish I could help, but I have no technical background.
I could help w/research, though, if ever that's needed. I also wonder if there could be a section listing the ongoing studies/research that are worthy of mention. I can help out w/that too if need be.
Lisa
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