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Harmony tests - a no risk test for Down's Syndrome (unlike cvs and amnio which carry a small risk)

41 replies

LemonPeculiarJones · 01/03/2013 09:21

Hello,

I just wanted to start a thread here to make it more widely known about these risk-free tests for Down's syndrome and other anomaly markers.

So if you get back worrying odds from your first scan with regards to Down's syndrome you have a choice on the nhs of a cvs test or an amnio, both of which carry a very small risk of miscarriage.

These blood tests, 'Harmony' tests, are another option. They can detect and then analyse foetal DNA within the mother's blood stream, and although they are not diagnostic they are 99% accurate. And because they are a simple blood test they pose no risk to the foetus.

Unfortunately they are private and therefore expensive. The harmony tests cost £400. They also offer a scan for £180 where they look for multiple markers for Down's syndrome (whereas the nhs only look for the nuchal fold measurement). If you are early enough in your pg they can redo your hormone blood test too (included in scan cost).

The Harmony test results take 10 days - 2 weeks to come back. But I had the scan yesterday and that alone was so reassuring, all the stuff they look for as markers for Down's syndrome were completely absent. They redid my bloods and they came back damn near perfect (whereas my nhs results were a bit worrying) and the lovely doctor recalculated my odds - they went from 1:397 to 1:1654. And she said it was only my age (40) preventing the odds from being in the higher thousands.

So hopefully the results from the Harmony tests will confirm that!

We couldn't really afford it and have just whacked the cost on our overdraft...and I know that my original odds weren't terrible....but the odds with our first DC were 1:4000 so hearing 1:397 for this pg was concerning.

Just wanted to put this info out there.

I had the tests done at the Fetal Medical Centre on Harley Street in London. The clinic is headed up by Dr Nicolaides, who is world renowned. I think he was the person who pioneered IVF. He developed the tests and is pushing for the nhs to offer them to everyone. The centre is non-profit, all the money goes back into research.

I don't think their website has info about the harmony tests, but if you call up they can tell you about them and book you in.

You can get the tests done at other places than the FMC too but I don't think they are that widespread yet.

Hope this helps someone out there! I was so grateful to learn that we had this option. Smile

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OneLittleToddleTerror · 01/03/2013 09:25

I've heard about the Harmony Tests here too. I think another clinic in London also offers them. (Can't remember which). How far ahead do you have to book? I don't think I can ever afford £400. But it's something to file at the back of my mind as an option.

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LemonPeculiarJones · 01/03/2013 09:39

Hi OneLittle. I called the centre on Monday afternoon and got an appointment for Thursday the same week. Don't know if that is typical though!

They did say that the rather eccentric Dr Nicolaides himself does all the tests on a Wednesday and that you can be waiting for hours and hours for your appointment on that day. But I was seen bang on my appointment time yesterday.

It is expensive. Hopefully it'll be offered by the nhs as soon as possible.

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PaulaPixie · 02/03/2013 20:25

Thanks for this info, very helpful! Smile

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LemonPeculiarJones · 03/03/2013 16:39
Smile
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worley · 03/03/2013 16:45

can I ask what gestation your at to have had this test done. and what markers they told you they were looking for at the scan?

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lolalotta · 03/03/2013 21:32

We had the scan and the test done a few weeks ago, we were very impressed with how they looked after us. If you go to the clinic between 10 and 11 weeks you can get the Harmony test AND the scan for £180.00.

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LemonPeculiarJones · 03/03/2013 21:36

Hey worley

I'm not sure about the exact time-frames re gestation and when you can have the harmony tests done, but I think you can have them at the same kind of time you'd have your first nhs scan (so 12 weeks) and any time thereafter. Not sure though, so give the clinic a call for certainty.

The markers they checked for during the scan were - the nuchal fold (as with nhs), the heart to see if both ventricles were developing in the expected way, the blood flow from the liver to the heart, and a few other measurements, spine I think and a few of others I can't remember specifically. They checked blood flow from one part of the foetus to another quite a bit. A lot of investigation was going on with regards to looking for Down's markers.

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Gatorade · 06/03/2013 16:59

I just want to give this a little bump as the more people who know about non invasive testing options the better!

I had the Harmony test performed 8 days ago and received the results today. I had been given a DS risk factor of 1 in 68 from the combined nuchal and bloods at the FMC, to me that was a too good result to risk losing a baby to the CVS procedure, despite the fact that the result was deemed to be well within the high risk category. It is worth noting that my first pregnancy did produce a baby with DS and I was given a 1 in 3 risk during the screening process, hence why 1 in 68 wasn't too bad in my eyes (although not great for a 29 year old!).

Anyway the Harnony blood results showed that it is extremely unlikely that the baby has DS (less than one in 10,000) thus giving me a screen negative result. The research I have done indicates that Harmony have never hada false screen negative result.

I know it may seem expensive but weighing up with the risk of losing a healthy baby to CVS it is worth it, also the profits from the FMC are transferred to their research charity, therefore helping everyone through prenatal screening research.

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LemonPeculiarJones · 08/03/2013 10:27

Such great news Gatorade Smile

These tests are such an important option.

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Caterpillar0 · 08/03/2013 19:32

Worley - you can have the harmony anytime from 10 weeks as I understand it.

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BubaMarra · 09/03/2013 11:56

lolalotta, how come if you go between 10 and 11 weeks you get the test AND the scan for the price of a scan for later bookings? It sounds great, just want to check if there is a catch 22 :)

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HumphreyCobbler · 09/03/2013 12:03

It costs £750 here. I would love to go for this, but this price is out of my affordable range.

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Gatorade · 09/03/2013 14:11

buba i think the deal price at the FMC was to help the FMC gather more data, by taking the deal (if it is still available) you have the harmony test before you know if your standard bloods and nuchal scan give you a high risk result, thus ensuring that the FMC obtain data from a wide range of people, not high risk only.

I paid full price as didnt have an early scan with them this pregnancy, it was worth it though for the piece of mind and avoiding the CVS.

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Caterpillar0 · 09/03/2013 14:26

I paid £400 at the FMC about 2 months ago, at 17 weeks (my first appt there) for harmony test + scan

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BubaMarra · 09/03/2013 15:41

Gatorade, thanks. Yes, that sounds like a good reason for them to do it. Win win situation actually.

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Dexidoo · 09/03/2013 17:25

I can recommend the FMC- went there for the Harmony/NT scan package for £180, the second scan at 12 weeks was pretty detailed and the 13week scan I had at local ANC showed nowhere near the detail I saw the week before.

I travelled 2 hours on the train for the appointment but it was definitely worth it. No screening test is 100% accurate but it has reduced my anxieties.

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nennyrainbow · 10/03/2013 21:55

I wish this was available on the NHS. We lost our healthy baby girl 3 weeks ago at 16 weeks 6 days due to a suspected infection caused by an amnio (done at my local NHS hospital). I know it's very rare for CVS and amnio to cause miscarriage of a healthy baby but it does happen.

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Caterpillar0 · 11/03/2013 00:01

Nenny that is devastating. I'm so sorry for your loss

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LemonPeculiarJones · 11/03/2013 10:04

Nenny so sorry for your loss, that is heart-breaking.

Thanks x

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nennyrainbow · 11/03/2013 11:17

Thanks. I did a lot of research online before the amnio and reassured myself that a miscarriage caused by amnio was extremely unlikely (the quoted risk is 0.5 to 1% but there seems to be a general opinion on the internet that the true risk is lower than this). I had actually read about the harmony test on a forum beforehand (I think it was a discussion on here at the end of last year) but didn't think it was worth the extra expense and hassle of going to London to avoid the low risk that the procedure was supposed to be. Obviously hindsight is a great thing, but you never know who is going to be the unlucky one in 200 (or 1 in 1000 in the case of an infection caused by amnio) and it just happened to be me. Ironically, I had waited 2 weeks to have an amnio instead of having CVS straight away as the miscarriage rate was lower. There was nothing that happened during the procedure that made me think anything had gone wrong and everything appeared to be sterilised properly. I have been told that if I were to get pregnant and undergo amniocentesis again, my risk of miscarriage would be no greater than in the general population, but it's a case of once bitten, twice shy, and I wouldn't want to risk it. But being 40, the chances are that my Down syndrome screening risk would come back high again (the reason I had the amnio) so I'd be faced with a choice of paying privately for Harmony or not having any testing at all.

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Dildals · 11/03/2013 11:56

Does anyone know whether the Harmony test can be done with twins? (I know, I should just call the FMC! Being lazy!)

If you have a nuchal test done with the NHS can they tell you the result straight away or do they have to wait for the blood results to come back?

I think have read (I have read so much now that I can't remember ...) that the private scan looks at a lot more markers than the NHS scan. Is that right?

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iclaudius · 11/03/2013 12:01

Dildals unfortunately it can't I don't think

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iclaudius · 11/03/2013 12:03

We had it done via our gp after having had our nuchal which was good but showed scary blood levels
We used LDL ( doctors lab) who simply sent us the I skated blood pack for vials etc
Results took 8 days

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LemonPeculiarJones · 11/03/2013 12:03

Yes that's right Dildals, the FMC scan looks at a lot more markers than the NHS. They take ages taking multiple measurements, looking at blood flow, checking the symmetry of the heart.

Not sure if the NHS can tell you the nuchal measurement at the scan. During my NHS scan the sonographer said it looked fine, though - I asked. Actual measurement came with blood test results.

Don't know re:twins!

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LemonPeculiarJones · 11/03/2013 12:05

iclaudius are you saying you had the Harmony tests done via your GP? If so that's very interesting, I wonder how widespread that service is. Was there a cost?

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