Should i take part in a clinical trial???

sazzleevans

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Hi

Well i went for my babies PM this afternoon. It was quite upsetting the baby was unwell from head to toe. She had fluid on the brain, a small hole in her heart, spina bifida, feet turned in and a twisted bladder.

Well, knowing i am quite open to research etc the consultant asked me to consider taking part in this study.

http://www.ich.ucl.ac.uk/ich/academicun ... %20Menu_03

I have read all about it and there does seem to be a benefit in taking the additional vitamin.

The problem is if you opt to take part then you are put into one of two groups. One group takes folic acid plus the additional suppliment and the other group take the folic acid and a tablet that contains nothing. The groups do not know if they are taken the suppliment or the dud tablet.

I would like to take part but i would also like to be in the group that takes the vitamin. I have found it on line and have ordered it as there seem to be no side effects. Would you take part if they cant guarantee that you will be in the group that takes the extra vitamin or not??

Sarah
 
I think its great your considering helping other people & furthering medical research and what not, but id be a bit concerned id feel like a lab rat :?

i think its only your decision, and having been previously affected by this issue then its defo something you need to consider seriously :hug:
 
mmm.....I am quite interested in Inositol. They seem to be saying that women should take folic acid and insitol to avoid issues like spina bifida in early pregnancy. I have quickly googled it and there does seem to be something in it. There seems to be no side effects the same as folic acid but in most studies women taken it have been less likely to have a baby with spina bifida than those who havent taken it.

I found it for £8.99 on ebay and am tempted to just take it if they wont let me join the group in their research that is taking it. I wouldnt fancy taking part if i took just folic acid and was in the failing group!!

Sarah
 
I've no idea either way, but if you've already ordered the vitamin on-line, it sounds like you won't be able to take part. I feel really unable to comment specifically as I've not been in your situation, I would be tempted to take part, as like you I'm always interested in research things, but I can understand it would be awful to take part and think that you might be missing out on something that could potentially help your baby. As it's a double-blind clinical trial, they wouldn't be able to guarantee which group you will be in, so couldn't guarantee if you would be taking the vitamin. The interesting thing about the study, is that to me, it's only looking at one part of the question, ie, DOES inosital help, but not WHY. That's obviously good research, as it means they are not considering too many variables, but it does mean that you have no idea if you are the sort of woman that would benefit from taking it.

I was in a similar position vis a vie taking part in a clinical trial, there is one being run currently for the long-term development of breast cancers. I'm quite high risk, as quite a few women on both sides of my family have had it, so was really looking forward to taking part in the trial. I must admit I wimped out as they needed to take lots of blood samples and at the time I was undergoing a lot of dental surgery, and to have anymore blood taken felt too invasive, plus I was starting to get quite nervous about needles. I feel with these things, it has to be the right time for you as well. Good luck, and you're great for even thinking about it :hug:
 
Thanks i feel bad ordering them. Dont know if i will take then but i was quite impressed by the research that has been done..Which really is naughty of me ie using research to maeka decision but then possibly wimping out of any further research for selfish reasons, those being i want to try taking the vitamin myself.

Cant decide what to do. My OH said we would chat about it on the weeked.

Sarah
 
I dont think you should feel bad ordering them at all! Totally understandable :hug: I would sleep on it for a couple of days, have a good chat with OH and then make up your mind. It's obviously a big issue for you hun! I understand you might like to take part, but there will be lots of other women also taking part - you are only one of many, so if you decided not too, it's not like the study wont take place. If you felt like you wanted to be involved, but not actually do the trial, maybe you could donate a small amount towards the research in your baby's memory?
 
Yes, sleep on it is the best advice and maybe a donation.

Sarah
 
but then possibly wimping out of any further research for selfish reasons


hun if u cant be selfish when ur thinking of the life of a future child then when can u be :hug:
 
I would have a think about it for a few days then decide- do you get extra checks during the pregnancy etc as that could be another advantage of being on the trial....
 
Hi

No you dont get any extra check just free folic acid and the additional vitamin that they are trialing.

Thanks girls.
SARAH
 
:wave: hi again Sarah,
I remember when you lost your angel, I also remember how totally unselfish you were and shared your story/ pain and heartache to try and get a message across.
As you know I tell everyone who is TTC about you and your daughter... Itell them about Folic acid and how it reduces the risks..... this is thanks to you..
I know many woman who have said to me....god I didn't know that...when i tell them about the importance of folic acid in the FIRST 6 weeks..... most people think it's something they get at first MW appointment...(too late)
ANYWAY...waffle here...
I know you've been through so much already....
I know every month your message helps mothers to be take Folic acid,
I know you are helping babies now to have a higher chance of good health.
What I am trying to say is..... You are already doing your bit, and for you to do more would be an act of total unselfishness, My hat is off to you for even thinking about it.
I know this is the only way we can find answers, But please think of YOU... do what every YOU think is right for you and your family. You are a super star Sarah, well done no matter what you decide......
I am so sorry to say if I had went through what you have I wouldn't take the chance of it happening again......a message you have put out to us all,
My goodness what a dilema.....
Your such a brave strong lady, no matter what you decide, well done you! keep us posted please.. sorry long post.. :oops:
Lv and thoughts Yvonne xx
 
Hi Yvonne

Thank you ever so much for youri kind words. I do worry going on about the risks in early pregnancy may grate on some people. Only once something has said something quite stinging in reply but as you said i am quite passionate that people should be aware that taking folic acid reduces the risk of spina bifida by a whopping 70%.

This trial appealed to me as its concentrates on the 3o% for whom folic acid doesnt seem to have an effect. Scientists seem to think by taking this additional suppliment could reduce the chances for the remaining 30% for whol folic acid doesnt work.

My gut feeling is to think of myself and just take the suppliment. This has been hard but it was the basis of counsilling. It sort of came out through chat that i tend to think of other people and other peoples feeling a bit too much. Its a good quality but really at some stage i think i have to think about me. So i have to chat to my oh about when he gets home but i really would like to take it if it is so effective.

Thanks so much for your kind reply!!!

SARAH
 
I'd be interested in buying some too. I have spina bifida occulta (mild form) It doesn't really effect me as it's so mild but I do worry that my child would be effected too. I'm on folic acid but think I would like to take this too.
 
Hi

I think it would be a good idea for you too. In fact i think if you can afford the £8.99 for 300, which is nearly a years worth, most people should take it if its something that they might be concerned.

http://www.hollandandbarrett.com/pages/ ... 1&cpid=187

These are £8 odd for 100 but on ebay they are the same price for 300.

SARAH
 
Hiya,

having worked in clinical trials, I think it is very unlikely that they would let you choose what group to go in. Most of the results rely on the random assignment of people to placebo vs drug groups.

If it was me, and I had had the same problems that you have had in the past, I would not go on the trial. I would definitely take the supplement as well as folic acid.

K.xxx
 
I wouldn't risk it tbh, you really deserve to be a mummy aafter all you have been through.
 
I tend to agree with you but i just think if this is something that all women should take as well as folic acid but they just need the research to back this up then it a bit unfair but still i am leaning more towards just taking it!!

Sarah
 
Ordered some on line. Thanks for the heads up, I really appreciate it as this is my biggest worry and I'm not even preggers yet.

Thanks very much Hon :wink:
 

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