WWYD? Research Study

RunCC37

Hi Girls

I was contacted by my clinic because we are eligible to participate in a research study with our upcoming IVF cycle. Basically, they want to try out a new culture media. They will randomly divide our embryos into two groups and culture them with the experimental media and the control media. When it is time for transfer (if we have anything to transfer), they will determine how many (two embryos if there is one of each type, and one if there is only one of a kind). The benefit for us is that we'd get CCS for free. The drawback is that we won't have any say in our ET/FET when/if it comes time. 

At first, I was ready to dismiss it and say no thanks because of our history (poor embryo quality... I will be shocked if we have even one embryo make it to blast from this cycle). CCS isn't really appealing because, well, as far as we know, we've never had a blast. But then I talked to DH and he seems to be interested in participating. He thinks that our doctor is hooking us up with the free CCS even though he's well aware of our history. 

I don't know what to think... I'm planning to call the nurse back with questions, and am interested in what you would ask or do if you were in the situation.

LilSip0611

Lurking...

I was reading about this study when I was last in Basking Ridge for our ET. I'm a science person so it seemed pretty interesting to me and I would probably participate if we were still trying. The CCS testing might give you a reason why you haven't gotten blasts from past cycles but the RMA lab is pretty awesome so you might have better luck than you have before. If you can, I'd set up an appointment with your RE to discuss your options more. It's a tough decision to make either way. Good luck!

NYGiants2010

What is the name of this study? I am currently enrolled in a RMA study. But it sounds different to this one....

katib77

What is CCS, that's a new one for me.  Personally, no matter what the CCS is if that is all that's free and not most all of the cycle I might be hesitant.  If it was a research study and all/most of the costs were free then I'd do it because it's a chance at minimal cost.  That said, I've looked often these past two years and we've never qualified for a study in the Chicago area because either I was too young, too old, didn't have PCOS or whatever requirements they had.  

RunCC37

Thanks @LilSip0611! @NYGiants2010, I sent you a PM. @katib77, CCS is full chromosome screening on the embryo. PGD only screens a few of the chromosomes, but CCS looks at them all. 

katib77

RunCC37 said:

Thanks @LilSip0611! @NYGiants2010, I sent you a PM. @katib77, CCS is full chromosome screening on the embryo. PGD only screens a few of the chromosomes, but CCS looks at them all. 

Ooo!  Well I know PGD is like $3,000 oop so I can only imagine the cost of CCS.  I would go for it then!

ronniesgirl1981

I say go for it!!  At this point, it couldn't hurt and might end up being the best thing you ever did!!

RunCC37

Yeah, the CCS is somewhere around $4-5K. Several doctors have recommended it for us, but we can't justify that expense considering that we've never had any embryos make it to the blastocyst stage. We figured if we ever got a blast, we would just transfer it and pray. I don't see how CCS is going to help us... maybe I'm looking at this the wrong way though... ??

hmz819

If I could get ccs testing for free I'd go for it. Ccs will tell you if the embryos you made are normal which will help ease your mind during the 2ww since you know going in the blast is at least normal. Does this make sense?

Twinkie0612

Is the CCS done on day 3 or day 5?  My CGH was done on day 3, so theoretically I could find out if any of our embryos were chromosomally normal, even the ones that stopped growing.  Since we only had two blasts and transferred both, we will probably not send out the biopsies (We did "hindsight" CGH, which means our biopsy was done on day 3 and frozen, so we could still do a fresh tranfer and decide afterwards if we want to do the testing).  It seems like the $4,000 would be better spent on either additional testing for us or put towards our next treatment cycle.

If it were free, I might consider doing it.  It might give us an idea of why most of our embryos are poor quality.

RunCC37

That does make sense @hmz819. Maybe I'm just being pessimistic, but the thought going through my head goes something like this: hopefully and maybe we will get one blast which we will transfer. Eventually we will find out if it is viable or not... I guess if it is not, we could spare ourselves the possibility of a loss. Though getting to the end of an IVF cycle with no embryos is kind of a loss in itself. I don't know...

@Twinkie0612, I'm not sure if the embryos are biopsied on day 3 or 5, but I do know that the study will allow for fresh and frozen transfers (depending on how my uterus is looking and if I'm at risk for OHSS). Do you think the process is worth it for the information it might provide? Hmmm....

CameraBug131

I'm in that study (is it SUMMIT?) at RMA. Although I've never been through IVF before, I don't feel like it effected my cycle, except that it gave us the CCS information. The CCS is done on day 5. The only other factor is that we had to transfer two and we could not choose the gender. 

poohniki

Rma is known for that study. Almost everyone gets one free somehow. I say go for it. If there are issues and you need another cycle later then you know that you should do CCS. But if they all came back fine, then you know it's probably not worth your money. They do the testing on Day 5. They won't put back more than 2, one from each media. Both types have been successful in other clinics so it's not too experimental.

AquaJacks

I participated in the Summit study. As long as you are okay with transferring two, the CCS does help stack the odds.  We had 21 make it for testing, so it would have been a fortune! Of those 15 were normal, in the end I don't know if it really changed which would have been transferred but it did make me more confident and less stressed during the 2ww. You just have to be ready for twins. 

sorrellam30

If it were me I'd go for it!

RunCC37

Thank you so much for the feedback, ladies I'm thinking about it & plan to call the nurse & doctor tomorrow. I'm just baffled that we'd even be considered for this after knowing our history with the previous two IVF cycles. But who knows... Maybe this time things will be different (pretty please!!!!)