HG Researchers Need Your Help! Genes and Risk Factors Study

See research studies underway and learn how you can participate.

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Postby tatteredtoo » Mar 14, 2007 2:09 pm

Heh, one more question... just out of curiosity though. Are you guys doing a certain number of participants (I know some studies will do say 1000 of one type and 1000 of another type to compare against, for example), or are you just taking in to account as many participants as you can get? I don't know if that's something you can elaborate on or not but I wanted to ask anyway. :)
Tina
2 Full term HG pregnancies and 1 HG anembryonic pregnancy (7-8 weeks)
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number of recruits

Postby mfejzo » Mar 14, 2007 2:17 pm

We are shooting for 500 women affected with HG and 500 friend controls, but if we get more in our 2 year time frame, we'll use more.
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Postby tatteredtoo » Mar 14, 2007 2:22 pm

Nice to know, thanks! I've let my other friends with HG who don't frequent the forums know. Hope they're interested in helping out.
Tina
2 Full term HG pregnancies and 1 HG anembryonic pregnancy (7-8 weeks)
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Postby IslandDreamer » Mar 15, 2007 4:28 pm

And any old friend with normal pgs? Okay.
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Postby carla » Mar 15, 2007 4:42 pm

I am in Canada. Can we volunteer too?
Severe HG with DD (Gracee) 30/03/2006
Severe HG with DD (Amara) 01/04/2008
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HG study

Postby mfejzo » Mar 15, 2007 6:48 pm

Sorry, we are only taking participants from the US this year-we may expand to outside the US in our second year though, and I will post here if we do, so keep checking.
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Postby TraciWilliams2 » Mar 26, 2007 1:39 pm

I would love to participate in this and was wondering if the friend needed to be from my area, or if she could be in another town. What about a sibling's DNA that didn't have any HG problems (not even morning sickness?) Thank you for doing this study!!
http://www.myspace.com/st2kids
MacKenzie (mild HG)
Dominic (severe HG)
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Postby mfejzo » Mar 26, 2007 1:48 pm

Hi.
Your control can NOT be related, but your control CAN be from a different state. Please contact me at nvpstudy@usc.edu and I will get back to you within the next few weeks.
Thanks for your interest,
Marlena
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Postby Jillebean25 » Mar 28, 2007 12:46 pm

Ok, I sent Marlena an email so now I am just waiting to hear back from her. I have my control study partner and she has already agreed to go along with it :) :lol:
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Postby ncgirlinmn » Mar 30, 2007 9:28 am

Hi,
I'm just curious to know how we are able to pick our own controls. I would think that would taint the data somehow. I've been in other medical studies (in college) where I had absolutely no contact with the control subjects.

Wouldn't us picking our own control somehow lessen the impact/integrity of the findings?

thanks,
Anna
DSS Matt - 17
DSS Tyler - 14
DSS Bryan - 14
Angel - 08/04
Sam - 10/10/06 (HG wk 8 - delivery; stroke at 11 wks)
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Postby mfejzo » Mar 30, 2007 1:24 pm

That is a great question. In our last study, we used controls that were primarily recruited from an online mother's group from Palo Alto. The group was not well matched with the people on HER for things like age, education, race, etc. likely reflecting the demographics of the palo alto area. We believe by having people choose friends, we will get a better overall matching of these factors. Your friends don't need to be perfectly matched for any/all those things, but when we look at the control group overall, we think it will be. We also believe friends who have seen their friends go through HG (or heard them talk about it) are more likely to be motivated to fill out the survey and donate a saliva sample.

An update: we are nearing 150 participants (we need 500, but this is a great start!
Marlena
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Genes and Risk Factors Study Update

Postby mfejzo » Apr 20, 2007 9:18 pm

Hi all,
Just wanted to update you that we already have 226 HG participants in the study and 53 friend controls! This is a great start, thanks to all of you who have contacted me! We are submitting a grant in the beginning of June to the NIH and I am hoping we can recruit over half the necessary 500 HG-participants in that time frame which would be 250-so at 226, we are almost there. If you know anyone who has suffered with HG and has not participated, please let them know about the study and have them contact me at nvpstudy@usc.edu. Thanks for your help in finding a cause and cure for this devastating disease!
Marlena
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Postby AndreaMMS » May 15, 2007 7:33 pm

Is there any update with this? I was approved and got a study number and the confidentiality info right in the first few days and haven't yet been contacted to do the phone interviews...
Naomi Soleil born 9/23/05- Severe HG
Genevieve Siobhan born 6/05/08-Severe HG leading to PICC. Infected PICC, blood clot, blood infection,C-Diff, pytalism, thrush, UTI.....
And totally worth it!!!!!!
Hang in there!
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Consent interviews

Postby mfejzo » May 15, 2007 9:22 pm

Hi. I will get to you. Please be patient. I am getting to everyone slowly but surely and consenting those who emailed me their phone numbers first. We plan to enroll for 2 years and only started in March. We made our goal of 250 eligible participants for a grant we are submitting in a couple of weeks so we are on target. Thank you again for your patience!
Thanks,
Marlena
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Postby AndreaMMS » May 17, 2007 8:30 pm

I apologize if it sounded like I was rushing you Marlena. I posted my question before I read the entire thread (won't so that again- lesson learned!)

Take your time, and thank you so much for doing this study. It means a great deal to those of us who suffered from and struggled with HG.

Andrea
Naomi Soleil born 9/23/05- Severe HG
Genevieve Siobhan born 6/05/08-Severe HG leading to PICC. Infected PICC, blood clot, blood infection,C-Diff, pytalism, thrush, UTI.....
And totally worth it!!!!!!
Hang in there!
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Genetic Stude Update

Postby Kimber » May 27, 2007 9:26 pm

Hi all. We are moving along on the study and excited for the information this will provide us. Perhaps we will be able to test our daughters in the future and determine before pregnancy if they will have HG.

We are going to need to increase the number of women in the study in order to qualify for a grant. This means we need lots of help recruiting more women. We will need 1000 women and 1000 friends (without HG) to apply. This could take a 3 years or more - let's see how quickly we can make this number!

THANKS! This is a huge opportunity for all of us. It will validate once and for all that HG is a real disease and not a psychological disorder.
Kimber
kimber@HelpHER.org
kimber@hyperemesis.org
HER Foundation Co-Founder
Director of Ed & Research
2 pg w/nine-months of HG
Mom of two - 1999, 2003
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Postby MichellevsHG » May 29, 2007 7:33 am

Perhaps we will be able to test our daughters in the future and determine before pregnancy if they will have HG.

I'll do ANYTHING to prevent my daughter from having to go through this horrific disease. 8)

I'll help get the word out about this research opportunity!
Image
DD, 9/14/07, (6w -38w) Severe HG (induced due to PreE) - barely treated until 20w; 40+lbs weight loss; multiple ER/hospital visits, PICC, zofran, benedryl, zantac, & baby aspirin; new Ob at 21/22w; mild Polyhydramnios (37w)

Loss, 9/17/13 (11w6d), Aggressively treated severe HG from 5w - 5% weightloss in 6 days, IV protonix/fluids/zofran @ 8w; zofran pump, benedryl, phenergan, zantac, baby aspirin

Loss, 12/7/13 (4w5d)

Angel Sent to Heaven, 10/21/92 (7w4d), Undiagnosed/Untreated Severe HG
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Genes and Risk Factors Study Needs Participants

Postby mfejzo » Jun 07, 2007 4:42 pm

Hi all,
As Kimber wrote, the National Institute of Health is requesting a minimum of 1,000 people affected with HG (and 1,000 unaffected) in order for us to get funding for the genetic study. The good news is, recent studies have proven that the methodology (genome-wide association scanning) that we plan to use in this study really works. I know there are over 2,000 registered users on the site. If just half of those participate, we will reach our goal. We are progressing-currently 272 participants affected with HG-but we need EVERYBODY to participate. This is a groundbreaking study that will help us find the true cause and hopefully a cure for this devastating condition, but we need each and everyone of you to help complete the puzzle. Please volunteer and please urge any affected friends and post on other sites/forums to help us reach our goal as quickly as possible. We are all in this together (I lost a baby to HG in 1999) and together we can do this.
Thank you for your help! And thank you to those of you who have already participated!
Sincerely,
Marlena
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Postby Starfoot » Jun 08, 2007 7:57 pm

By I.V. hydration do ER visits count? :? If my insurance would have let me I would have taken the darn pole home with me but as it was, I just kept going back to the ER every few days... :cry:
<3 ~ Riella
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Postby mfejzo » Jun 09, 2007 1:03 am

Sure-ER visit/inpatient/outpatient/doctor's office/home with iv hydration all qualify!
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