NIH Study

This forum is the place to brainstorm creative approaches to fundraising and raising awareness. For more information, visit http://www.preeclampsia.org/make-a-diff ... undraising or contact Director of Community Relations Laney Poye at volunteers@preeclampsia.org.
cj7suthrnbelle
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Re : NIH Study

Postby cj7suthrnbelle » Tue Dec 16, 2003 05:19 pm

I'm interested. Anything to help. What do I need to do?

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annegarrett
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Re : NIH Study

Postby annegarrett » Sun Oct 26, 2003 08:10 pm

Anyone who has access to a computer can register with us--or you can print out the registration page and hand write the information and mail it to us. We will enter it for her.

The selection process is random so we don't "pick" participants--the computer will--but there will be other studies and I expect everyone who is registered will have the opportunity to get more involved and participate in other studies if they are not selected for this one. Thanks!

Anne Garrett
Executive Director
Preeclampsia Foundation

jabeau
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Re : NIH Study

Postby jabeau » Sun Oct 26, 2003 10:59 am

I am a mother of a daughter who had preeclampsia which got worse after delivery. I know she would very much like to participate as well as the family. She doesnt have a computer, she uses mine but I'm sure I could get all the information you needed from her and the baby and everyone. Also my mother had toxemia with all of us. It was worse with her first but had mild with the other three. I was never diagnose myself but I believe I had some of the symstoms severe swelling and a some high blood pressure. Would love for my family to be involved. Thanks
Julie

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annegarrett
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Re : NIH Study

Postby annegarrett » Sun Sep 28, 2003 12:28 am

The NIH study will begin as soon as we have our IRB approval which should be by November at the latest. We will have our registry send us a list of every 4th name and those people will be contacted about participating in the study. We cannot guarantee your name will be called out for this study, but in order to be considered for this or any future study we conduct or participate--you MUST be registered with the Preeclampsia Foundation. To Register--go to our Home page and click on the button "Register with Us". We currently have over 500 registered members. This is a pilot study involving 50 women and their families. If it goes well--it will lead to a larger study involving a much larger pool. Registering with us is one of the simplest things you can do to help find a cure. Please join if you haven't already.

Take care,

Anne

molly
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Re : NIH Study

Postby molly » Sat Sep 27, 2003 10:29 pm


I would love to participate in this study - please sign me up when the paperwork gets approved!

Mom to Zoe Grace, born at 34 weeks (6-3-03) due to preeclampsia.

christina
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Re : NIH Study

Postby christina » Wed Sep 24, 2003 07:24 pm

I would like to participate in this study.

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annegarrett
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Re : NIH Study

Postby annegarrett » Tue Jun 10, 2003 10:49 pm

At least for this study--you have to have been diagnosed with preeclampsia or HELLP Syndrome. You cannot just "think" you had preeclampsia or HELLP and unfortunately PIH isn't enough (can you imagine?!) but they may be changing the criteria for entry into the study--will update you all when we know more.

We will need 50 women and their families. Given that we are approaching 1000 registered members--I think we will be able to find that many--but hey--we are going to be doing a whole lot more studies especially via our website with surveys, etc... Stay tuned for those!

Anne

akemt
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Re : NIH Study

Postby akemt » Tue Jun 10, 2003 06:16 pm

Is this pre-eclampsia specifically or does pih count too[?] lol

Because I would love to participate though was diagnosed with pih durring my pregnancy. Let me know and I'll start convincing our family...lol

Catherine (22)
DH Britton (27...soon)
Emma Margaret (03/02/03) 37 weeks from PIH & oligo (caused by pih)

expert on call
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Re : NIH Study

Postby expert on call » Mon Jun 02, 2003 11:35 am

Update on this. We are working with the NIH to finalize the questionaire and we will need to get what is called an IRB (Institutional Review Board) approval before we start. We are hoping to launch it in July/August.

Every registered member will get an email notifying them that the study has started and some details and we will also put a big notice on the forum.

If you haven't registered--go to our home page (click on our logo above) and then click on the REGISTER box.

I know we will have a great study!!

Expert on Call

tahoe 4
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Re : NIH Study

Postby tahoe 4 » Mon Jun 02, 2003 10:49 am

I am interested in participating. I had severe PIH and Eclampsia in December 2002. Thanks.

Stephanie


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