HG Researchers Need Your Help! Genes and Risk Factors Study

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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
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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!
M
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Postby mfejzo » Jun 14, 2007 11:43 pm

Hi. Some people are writing asking if we still need people for our HG study. YES!!! We need 1,000 women who have had or currently have HG to participate. We are at 287....so we need 713 more of you out there. Please participate and help by passing on the info to your affected friends.
If you are interested in participating to help us find the cause of HG, contact me at nvpstudy@usc.edu
Marlena (2X HG survivor)
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Postby Xphile_mo » Jun 18, 2007 3:51 pm

I would LOVE to participate .... sadly, I am a UK'er and you're not able to take me. :( :( :(

So ....... c'mon you US HG sufferers!!!!!! :D If you have time, PLEASE take part in this fabulous opportunity to help those who come after us!!

:hugs: :hugs: :hugs:
Moira x x x

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Still need people for our HG genetic study

Postby mfejzo » Jun 22, 2007 12:22 pm

Hi. Some people are writing asking if we still need people for our HG study. YES!!! We need 1,000 women who have had or currently have HG to participate. We are at 303....so we need 697 more of you out there. Please participate and help by passing on the info to your affected friends and your ob office.
If you are interested in participating to help us find the cause of HG, contact me at nvpstudy@usc.edu
Marlena (2X HG survivor)
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Postby mfejzo » Jun 29, 2007 7:57 pm

Hi. Some people are writing asking if we still need people for our HG study. YES!!! We need 1,000 women who have had or currently have HG to participate. We are at 310....so we need 690 more of you out there. Please participate and help by passing on the info to your affected friends and your ob office.
If you are interested in participating to help us find the cause of HG, contact me at nvpstudy@usc.edu. Finding the biological cause of HG will bring us that much closer to developing better therapies and a cure. Please take part-we need all of you to participate!
Marlena (2X HG survivor)
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Study update

Postby mfejzo » Jul 13, 2007 6:44 pm

Hi. Some people are writing asking if we still need people for our HG study. YES!!! We need 1,000 women who have had or currently have HG to participate. Thank you to our 316 participants....but we need 684 more of you out there. Please participate and help by passing on the info to your affected friends and your ob office and posting on pregnancy-related websites.
If you are interested in participating to help us find the cause of HG, contact me at nvpstudy@usc.edu. Finding the biological cause of HG will bring us that much closer to developing better therapies and a cure. Please take part-we need all of you to participate!
Marlena (2X HG survivor)
nvpstudy@usc.edu
mfejzo
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Postby mfejzo » Jul 23, 2007 11:39 pm

Hi. Some people are writing asking if we still need people for our HG study. YES!!! We need 1,000 women who have had or currently have HG to participate. Thank you to our 327 participants....but we need 673 more of you out there. Please participate and help by passing on the info to your affected friends and your ob office and posting on pregnancy-related websites.
If you are interested in participating to help us find the cause of HG, contact me at nvpstudy@usc.edu. Finding the biological cause of HG will bring us that much closer to developing better therapies and a cure. Please take part-we need all of you to participate!
Marlena (2X HG survivor)
nvpstudy@usc.edu
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We are one-third of the way there!

Postby mfejzo » Aug 04, 2007 11:41 am

Hi all,
We are one-third of the way there, with 333 eligible participants with HG! Please pass on my email nvpstudy@usc.edu to anyone you know with HG so we can get to our 1,000 as soon as possible. We need all of you to participate to help find a cause and cure for this devastating disease. You can be, but do not need to be currently pregnant to participate.
Thank you to all of you who have already contacted me!
Marlena (HGX2)
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Postby Xphile_mo » Aug 08, 2007 9:48 am

Can I also just ask - can the control have had 2 pregnancies if one did not come to full term, or is it only if they have had 2 full-term pregnancies?

(sorry if that upsets anyone, but one of my control possibilities has had 3 pregnancies, but only has 1 child) :(
Moira x x x

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Postby mfejzo » Aug 08, 2007 9:58 am

She needs to have had at least 2 pregnancies that went beyond 27 weeks to be sure she didn't develop severe nausea/vomiting during the 1st or 2nd trimester.
FYI here are the control eligibility questions:

1) Have you had at least 2 pregnancies that went beyond 27 weeks?

2) Did you have a) no nausea and vomiting or b) mild (meaning that it did not interfere with your daily routine) in all of your pregnancies?

3) Did you have any weight loss due to nausea and vomiting in any pregnancy?

4) Did you seek medical attention to treat symptoms of nausea and/or vomiting in any pregnancy?

5) Are you between the age of 18-50?

M
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Postby Xphile_mo » Aug 08, 2007 11:45 am

Ah, thanks for clearing that up. Don't think she made it to 27 weeks with the other two pregnancies so that rules her out. Have others to ask though, so will do!
Moira x x x

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Postby Xphile_mo » Aug 12, 2007 10:28 am

If you are <b> NOT </b> from the US and would like to take part, you now can - if you can afford to pay for a 5-15 min phone call to Los Angeles, California and possibly for the DNA samples to be sent and returned.

Please e-mail marlena @ nvpstudy@usc.edu if you are interested and she will let you know your eligibility for taking part in this fabulous study opportunity.

I have posted a separate thread also in this folder in case non-US HG'ers did not check back to this one.

Any help is greatly appreciated x x x
Moira x x x

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