HG Researchers Need Your Help! Genes and Risk Factors Study

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study update

Postby mfejzo » Sep 08, 2007 12:36 am

Thank you for all your posts Moira, and Alyssa is adorable!

Just a quick study update:
Thank you to our 360 participants, but we have 640 to go...we need everyone who has had HG to participate to help us find the cause and cure! Please contact me at nvpstudy@usc.edu to participate.
Thank you!
Marlena (2XHG survivor)
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Update...

Postby mfejzo » Oct 13, 2007 12:19 am

Just a quick study update:
Thank you to our 385 participants, but we have 615 to go...we need everyone who has had HG to participate to help us find the cause and cure! Please contact me at nvpstudy@usc.edu to participate.
Thank you!
Marlena (2XHG survivor)
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Postby Jenny » Oct 13, 2007 11:03 am

I am curious, my interview was quite a while ago and I sent the forms quite a long time ago and haven't heard anything. Does that mean you never got the forms or just there is a time delay between? Does it impact anything if I am once again expecting?
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Postby mfejzo » Oct 13, 2007 11:10 am

Congrats on your pregnancy and of course you can still participate-we need you. If you haven't received your kit, that means we never received your consent forms (sorry-I don't know why). Please fax or mail them again. Here is the link to the forms if you lost them....http://www.helpher.org/downloads/USC_In ... t_Form.pdf
There may be a new section on sending in your medical records if possible that was not on the old form you sent, so let me know if you have any questions.
Thanks for checking in!
Marlena
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HG study-please help

Postby mfejzo » Oct 22, 2007 11:02 pm

Hi all. Participation is slowing down and we really need everyone who has had HG to participate to find the biological cause of HG. If you are too sick to participate now, please have a caretaker email me (nvpstudy@usc.edu) with your contact email and put HG NOW in the subject line so I can get you in the system and contact you when you are feeling better. Please spread the word about the study by passing my email address out to your nurses and obstetricians and any friends with HG. You do not need to currently be pregnant to participate, you just need to have suffered from HG treated with iv hydration at least once. There is no cost or travel to participants living in the US. The survey can be filled out online and we will send you a kit in the mail to collect your saliva. This study is the first step to finding the cure for HG. Please help make a difference so the next generation doesn't have to suffer like we did.
Sincerely,
Marlena Schoenberg Fejzo, Ph.D, nvpstudy@usc.edu
HG Researcher and 2X HG sufferer
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Please help-everyone is needed!

Postby mfejzo » Nov 04, 2007 11:12 pm

Hi all. Participation is slowing down (thank you to our 397 HGers and 126 friends---but we need 1,000 of you out there!!!) We really need everyone who has had HG to participate to find the biological cause of HG. If you are too sick to participate now, please have a caretaker email me (nvpstudy@usc.edu) with your contact email and put HG NOW in the subject line so I can get you in the system and contact you when you are feeling better. Please spread the word about the study by passing my email address out to your nurses and obstetricians and any friends with HG. You do not need to currently be pregnant to participate, you just need to have suffered from HG treated with iv hydration at least once. There is no cost or travel to participants living in the US. The survey can be filled out online and we will send you a kit in the mail to collect your saliva. This study is the first step to finding the cure for HG. Please help make a difference so the next generation doesn't have to suffer like we did.
Sincerely,
Marlena Schoenberg Fejzo, Ph.D, nvpstudy@usc.edu
HG Researcher and 2X HG sufferer
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Please participate-we need all of you! And some news!

Postby mfejzo » Dec 08, 2007 12:31 am

Seasons Greetings Everyone! Please think of our future HG sufferers this holiday season and participate in the HG study that will help us find the biological cause of HG and bring us one step closer to putting an end to the misery! Thank you to all of you 426 participants-each of you is bringing us baby steps closer and are a critical piece of the puzzle that is HG!

I also wanted to let you know that we have isolated DNA from over 100 of you HGers and your friend controls and are almost ready to start some preliminary testing of candidate genes. I will keep you posted on this site of any results. Also, we are almost done with the online survey and you will be hearing from me, hopefully before the end of January, so I can let you know the link to it on the HER website.

I know it is a busy time of year for everyone, so I appreciate all of you who have contacted and followed through with the study!

Happy Holidays!

Marlena nvpstudy@usc.edu
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Postby MichellevsHG » Dec 08, 2007 12:00 pm

I also wanted to let you know that we have isolated DNA from over 100 of you HGers and your friend controls and are almost ready to start some preliminary testing of candidate genes.

I just got goosebumps! Very exciting!

God bless you Marlena for your dedication to research on HG! :hugs:
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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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Postby Nature4 » Dec 17, 2007 8:51 pm

hmmm.. do you HAVE to have a friend? :cry: sibling probably wouldn't work eh? my only "friends" are long distance.
Enoch Nehemiah 5/24/08 HG
Andrew & Matthew 10 HG
Noah 6 mostly NVP/mild HG
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Postby aaronsmommy » Dec 17, 2007 9:00 pm

As long as they are in the US, and have not had hg, any friend would be fine. Relatives would not though.

I am in CA, and my friend was in New Jersey!
Aimee

Aaron 12/4/02
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Postby mfejzo » Dec 17, 2007 9:01 pm

Hi. Your friend can be long distance as long as they are in the US. Sister-in-laws work too as long as they are not blood-related and had little to no nausea in at least 2 pregnancies. If you can't find someone that fits in the 2 year timeframe, we will recruit someone for you. We really need everyone with HG to participate, whether or not they can recruit a control, so please contact me at nvpstudy@usc.edu or give me your email here and I will start enrolling you.
Thanks,
Marlena
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Postby Nature4 » Dec 17, 2007 9:09 pm

Sent you an email.
Enoch Nehemiah 5/24/08 HG
Andrew & Matthew 10 HG
Noah 6 mostly NVP/mild HG
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study update-getting there, but we still need your help!

Postby mfejzo » Jan 28, 2008 12:18 am

HG Researchers need your help! We started in March 2007 and thanks to so many of you, we already have 466 eligible participants with HG and 145 eligible friend controls, but we need 1,000 participants with HG to get the job done!

This study is designed to identify individuals affected with HG, to study epidemiologic factors via an online survey, to collect DNA samples from saliva through the mail at no cost or travel for you, and to search for genes and risk factors that may be potentially associated with this condition. To be eligible, you must have suffered from HG and had treatment for your HG that includes i.v. fluids at least once. TPN and NG tube treatments also qualify. We also ask if possible, for you to recruit a friend with at least 2 pregnancies who has NOT suffered from HG to serve as a control. If you live in the United States and are interested, please contact Marlena Schoenberg Fejzo, PhD at

nvpstudy@usc.edu or (310)210-0802.

Identification of genes and risk factors that contribute to HG will lead to a better understanding of the causes of severe nausea and vomiting of pregnancy, and should be a first step toward the development of more effective treatments or a cure for this devastating disease.

For those of you already participating, if possible, please have your friend controls email me so I can start enrolling them. We will begin our first genetic testing on the first 100 cases and controls in the next few months-it is very exciting and I will post any results on this forum.
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UPDATE

Postby mfejzo » May 06, 2008 11:03 pm

Hi all! We are now over half way there and in contact with over 550 HGers eligible to participate in the study. We have also been approved recently to enroll participants outside the US as long as they are willing to cover the cost of the 15 minute phone call to Los Angeles and the shipping of their saliva sample, and I have been contacted by women from all over the world including England, France, Australia, and Canada! In addition we started enrolling large families (those with 3 or more affected family members) for our follow-up study. Candidate gene testing is starting shortly, but we need 1,000 HGers to do the full-blown genome scan. Thank you to all of you who have already contacted me and for those of you who haven't, please consider participating and helping us find the cause and cure so the next generation doesn't have to suffer like we did. Contact me at nvpstudy@usc.edu or click on the link on the right sidebar (HER Foundation and USC Research) for more information. Lastly, our survey is up and running and can be found on the sidebar link as well.
We are all in this together and together we will find a cure! Thank you for your time!
Marlena nvpstudy@usc.edu 310-210-0802
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HG STUDY NEEDS YOU!

Postby mfejzo » Jun 13, 2008 2:26 pm

Hi all! For those of you already participating, please send in your saliva kits as soon as possible and refer your friend controls if you have one-we are almost ready to do our first candidate gene test. Finding the gene that predisposes us to HG will help us determine the biological cause of HG and help us to design better therapies that treat the cause rather than the symptoms.

We are now over half way there and in contact with over 550 HGers eligible to participate in the study. We have also been approved recently to enroll participants outside the US as long as they are willing to cover the cost of the 15 minute phone call to Los Angeles and the return shipping of their saliva sample, and I have been contacted by women from all over the world including England, France, Australia, and Canada! In addition we started enrolling large families (those with 3 or more affected family members) for our follow-up study. Candidate gene testing is starting shortly, but we need 1,000 HGers to do the full-blown genome scan. Thank you to all of you who have already contacted me and for those of you who haven't, please consider participating and helping us find the cause and cure so the next generation doesn't have to suffer like we did. Contact me at nvpstudy@usc.edu or click on the link on the right sidebar (HER Foundation and USC Research) for more information. Lastly, our survey is up and running and can be found on the sidebar link as well.
We are all in this together and together we will find a cure! Thank you for your time!
Marlena nvpstudy@usc.edu 310-210-0802
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HG RESEARCHERS NEED ALL OF YOU!

Postby mfejzo » Jul 01, 2008 11:41 am

We need everyone who has had HG with iv treatment to please participate in our study-we are over half way there, but need 1,000 of us to find the cause and cure! Each one of you is a piece of the puzzle-please contact me at nvpstudy@usc.edu and be a part of putting an end to HG!
Thank you,
Marlena Fejzo, Ph.D. and 2XHG survivor
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hg sTUDY

Postby louiselopez » Jul 03, 2008 12:02 pm

hello. I would love to participate but live in France. is there any possibility that the study could be extended worldwide. im sure you would then reach the figure 1000. is there anything the NHS Service in the Uk could help to support HG. I am an english woman living in France.
good luck.
there is always hope!!
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Postby louiselopez » Jul 03, 2008 12:06 pm

Have just posted and have read more and now realise the survey is worldwide. Will look into sorting out a sample.
there is always hope!!
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HG study outside US

Postby mfejzo » Jul 03, 2008 12:11 pm

Hi Louise,
Please email me directly at nvpstudy@usc.edu. We are now recruiting outside the US, but are not covered for the (5-15 minute) phone call to Los Angeles nor the shipping cost of the saliva sample for you and your friend control. However, we are covered for the cost to ship the saliva kit to you with all mailing supplies included except postage.
Thank you for your interest!
Marlena
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HG STUDY UPDATE-YES WE STILL NEED PARTICIPANTS!

Postby mfejzo » Oct 24, 2008 2:14 pm

Hi all,
Just a quick update to let you know that we currently have 684 eligible HGers and 223 eligible friend controls. In other words, we still need 316 more HGers and 777 controls, so PLEASE refer your friends with healthy pregnancies as well as your friends who have had HG with iv fluid treatment. Tell your OBs about the study so they can refer their patients. We have begun some preliminary genetic testing and I will let you know when we have the results to that, but the BIG study to find the biological cause can not be done until we get our 1,000 cases and 1,000 controls so please email me at nvpstudy@usc.edu to participate if you haven't already.

EVERY ONE OF YOU IS AN IMPORTANT PART OF THE PUZZLE AND WE NEED YOUR HELP IN ORDER TO FIND THE CAUSE AND CURE!

SINCERELY,
Your fellow HGer and HG researcher, Marlena
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