HG Study-email now, participate later

[mfejzo]

I am deeply moved by those of you who have contacted me from your hospital bed to participate in our study. Having suffered from HG twice, I know it is nearly impossible to motivate when getting through each day is such a struggle. I wanted to let those of you who are currently suffering know that you or a loved one can contact me at nvpstudy@usc.edu and just put in the subject line or text "HG NOW" and that way I can put your email address in our database and contact you in the future when you are feeling better to officially enroll you in the study. We need 1,000 participants who have had HG treated with iv or tpn or feeding tube to discover the biological cause and hopefully cure for HG and we currently have 316 participants. Each one of you is needed to help bring us that much closer to the cause and cure!
Sincerely,
Marlena nvpstudy@usc.edu

[MichellevsHG]

Ladies - if you haven't signed up, please do!

Spitting into the cup wasn't that bad!

[daisyfairside]

Is this just for the States? And if so, I'll be back in October/November (date got bumped up this week - YAY!), will the study still be in progress then?

[Carriebeary77]

I sent an email! I finally feel well enough.

[mfejzo]

Is this just for the States? And if so, I'll be back in October/November (date got bumped up this week - YAY!), will the study still be in progress then?

Right now we are just recruiting from the States, but may expand in the future. We will be recruiting for at least 2 more years so you can email me now if your email will be the same, or in October/November when you move back.
Thanks!
Marlena

[mandms mom]

can you participate if you are ttc?

[mfejzo]

Sorry I don't know what TTC stands for?
M

[Carriebeary77]

Trying To Conceive

[mfejzo]

Thanks! Yes, pretty much anyone can participate regardless of whether you are currently pregnant, TTC , or not pregnant, as long as you:
1) have had HG in a singleton pregnancy treated with iv and/OR tpn and/OR feeding tube,
2)are living in the US, and
3)are between the age of 18-50.
M

[myboys]

sent you an email and already got a response back....I will be slow getting it started b/c I'm currently am in HG hell

[Fern]

Hi,
I responded like a month ago and haven't been contacted yet to set up an interview. Just wanted to make sure you got me!

Fern

[mfejzo]

I don't have the name Fern in my database, but if I gave you an eligibility email with your study ID number you should be in the system. I am very behind with the phone consent calls and trying to get some help on this but plugging through them, so if you have an id number, I will get to you, but I am only in the early 200s now with still some people I haven't been able to schedule in the 0-200s, so it may be awhile. Please let me know if your contact info changes, thanks for your patience, and thanks for checking,
M

[Fern]

OK, great, I have an ID number, so no problem. I can be patient!

Fern

[mfejzo]

Hi all. We hit the 400 mark---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

[Marie]

Hello. I have attempted to e-mail you, but my computer says I don't have the proper program to do this.....hummm is there another way to sign up?

[mfejzo]

Hi. If emailing nvpstudy@usc.edu doesn't work for you, you can also call me and leave a message with your phone number at 310-210-0802 and let me know a good time to call you on fridays because I usually respond to phone messages on fridays.
Thanks and look forward to talking to you!
Marlena

[mfejzo]

Seasons Greetings Everyone! Please think of our future HG sufferers (our daughters and grandaughters) 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 the research forum 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! For those of you who are ill, please email me at nvpstudy@usc.edu and put "HG NOW" in the header and I will put you in my file and contact you in six months when you will hopefully be feeling better.

Happy Holidays!

Marlena (PLEASE CONTACT: nvpstudy@usc.edu)

[MichellevsHG]

Posted: Mar 26, 2009 7:01 am YES! HG study still needs participants!

Currently we have 776 HGers and 269 controls. We need 1,000 of each and not everyone has followed through, so thank you for bumping! Everyone counts to put an end to this devastating disease!

Marlena nvpstudy@usc.edu (2X HGer and scientist)

[mfejzo]

Hi All,
Thank you all who have participated thusfar. We are beginning to publish from the survey and here is a link to 2 press releases:

http://www.reuters.com/article/idUSTRE6A34VJ20101104

http://newsroom.ucla.edu/portal/ucla/wo ... 77990.aspx


It is very important for the scientific and medical community to recognize that HG has a genetic and therefore biological component and is not all in our heads, and this article shows we are getting there! Other interesting findings will be coming out in the next few years, but to find the biological cause, we still need participants, especially controls for this study. Although I have 1155 eligible HGers, only a little over half have followed through all the way to sending in saliva samples and completing the survey. In addition, many have not referred friend controls and so far I only have 560 eligible control participants, who also have not all followed through. I'm begging you to please spread the word and refer as many of your non-HG friends as possible (at least 2 pregnancies with no weight loss or treatment for nausea, non-blood relatives between 18-50). More HGers are also welcome and needed since not all eligible cases have followed through. Thank you for your help in finding the cause and cure for HG! We can't do it without you! Please have potential participants email me at nvpstudy@usc.edu
Please note: if you are too sick to participate now, just put HGnow in the subject line and I will email you in a few months.
Thank you!
Marlena