Harmony prenatal test - anyone know about it

[RTchoke]

today I am having a new kind of prenatal test called Harmony. It's non-invasive and seems to just be a new kind of blood test plus the regular nuchal scan but it's much more accurate than the traditional nuchal blood test. Apparently it's nearly as accurate as a CVS but without any risk.

I'm the only person I know who is having this test and nobody else seems to have heard of it let alone have been offered it. I just wondered if others have and knowledge of it and how accurate it is.

[griphook]

Never heard of it, how did it go?

[RTchoke]

Thanks for asking Griphook. I had a quick scan to confirm dates and then a blood test which you have to have between 10-11 weeks. They send the blood to California where they test it for free particles of the baby's DNA. Apparently it's almost fool proof for detecting Diwns and Edwards put they still recommend you have the nuchal to look for other things.

Apparently they expect the NHS to ppt fur this test in four it five years but the question will be whether it's just for high risk or all pregnancies.

[Part1]

Sounds amazing. Where did you have it done? Are you part of a trial, if you don't mind me asking?

[RTchoke]

I had it done at a place called the Fetal Medicine Centre on Harley St. It's run by a man called Prof Nickolaides who invented the nuchal scan. Trials have been done but they want more clinical data so it no extra cost on top of the normal nuchal scan cost there at the mo.

[lotsofcheese]

Thanks for sharing the information, it's really interesting. I'd love to have the test myself, but it sounds like it's not widely available yet.

Are you part of a clinical trial, OP? I wonder if that's why you weren't charged? Would be interested to hear how much it cost?

Sorry for so many questions!

[Monkeroon]

I went to holland in July to have a similar non invasive test done called materniti21. Works in the same way, a simple blood test so no risk of miscarriage. It cost about £950 + airfare to Amsterdam. They send your blood to America to check the fetal DNA in the mothers blood. There was a 2 week wait for the results. So glad they are doing it in the uk now. The fetal medicine centre is excellent.

[RTchoke]

I'm not part of a trial but they are collecting data. I paid £180 for a nuchal scan at the FMC and for the time being this Harmony test is a free optional extra.

[peiw]

Hi RTchoke I had my nuchal scan and blood test last Thursday and found that even though my the measurement was quite low, around 1.2mm my blood test shows that I had low papp-a and hence my risk came to about 1/250 :( I'm considering going to the FMC for another scan to confirm. Can you tell me if they do the similar combination of nuchal scan and blood test (similar to NHS) as well?

That's nice that they are offering Harmony test as free extra, wonder if you know how long the offer is for? I heard that it's 99% accurate!

[RTchoke]

Hi Pelw,

Sorry to hear you got a high risk combined test result. Since posting o had my NHS nuchal and found the baby has a nuchal measurement of 3.2mm which is quite high. I don't know my risk yet as I await my blood results but I'm going to the FMC to ask them to do the combined test and get my Harmony results.

In your position I'd definitely go to the FMC. The cost of the combined test there is £180 but they look at so much more than NHS scans. With my DC2 I got a high nuchal reading (3.1mm) but the FMC assessed my risk as only 1 in 5500 (down from 1:45 from the nuchal alone). They look for all sorts of scan indications for the triangles like curvature of the face, blood flow in the liver, structure of the heart and even number of little finger joints (Downs syndrome often results in only one little finger joint).having taken all that into account the give you a revised risk indicator. I found it so reassuring last time and I will again this time. Just remember you need to get there before you are 13+6, after that they can't measure the nuchal.

I feel for you as I'm going through similar. I'm so glad I had the Harmony but it's another 8 days til the results come back from the US and right now that wait feels like forever.

Good luck and let us know how you get on.

[RTchoke]

Sorry for the typos. "Indications for the triangles" should have read "indications for the trisomys"

[peiw]

Yeah I understand what you mean. DH and I are considering of getting an amnio but worried with the risk involved and the wait time till 16wks will feel forever!

Thanks or detailed description of what fmc checks.

Why are u going back to fmc for another combined test? I assume 'combined' means nuchal + blood test as what offered in NHS? From reading your earlier posts, I thought you had the nuchal scan there already and with the harmony test, it would be even more conclusive?

[RTchoke]

With Harmony you have a blood test between 10 and 11 weeks and at that point you have a quick scan to confirm dates. That's what I had last Monday.

Then you go back 12-14 days later to get the Harmony results and have the nuchal scan and combined bloods results. You have a nuchal scan as well as Harmony because although Harmony is near conclusive for chromosomal disorders it wouldn't pick up heart problems or other non chromosomal structural problems that the nuchal can pick up. I will have the nuchal & Harmony results next Monday.

[peiw]

Thanks for the clarification. Im 13 wks tomorrow guess might be late for Harmony now. Will still call them to check tomorrow - maybe just for nuchal scan for a second opinion. I wonder if its easy to get an appointment there? Hope your week wait goes by quick and fingers crossed everything goes well for u RTchoke.

[VioletElizabethBott]

Hello - Just checked on Mumsnet to see if anyone had heard of the Harmony test as I just had mine done at the FMC as well. I'm an older 2nd time mother (38) and paranoid about Down's risk so was considering a CVS if my nuchal fold test at 12 weeks made me nervous in any way.

The FMC offered me (rather cryptically at the time) "a blood test" at 10 weeks but when I got there explained more fully and gave me the name of the test (if you google Harmony Testing you'll get all the information - seems like it is now common in the States.)

My results came back two days ago with a 0.01% chance of the three trisomys (apparently the test is 99% accurate) which is a huge uplift and I've cancelled my CVS (I'd booked it as soon as I knew I was pregnant because I wanted Professor Nicolaides to do it, if anyone was going to.). I'm going to my 12 week scan next week at the FMC (like RTchoke I paid £180 for the scan and the Harmony blood tests were offered free).

I would recommend the FMC to anyone - I used them last time and the level of care and attention given during the scans, coupled with the fact that you get the results the same day, is just incredible. The staff are fantastic, the centre a touch of luxe (! after the NHS for everything else!) and most importantly you know you are in the best hands. I think if you are fortunate enough to be in London and are being seen on the NHS at King's you get the same team, led by Professor Nicholaides.

While not diagnostic, unlike CVS and amniocentisis, the 99% accuracy (sometimes given as 99.9% accuracy depending what you read) is a pretty amazing scanning tool.

I think Professor Nicolaides is campaigning to get the NHS to pick up the Harmony test nationwide. He also spearheaded the nuchal fold test (which I think I'm right in saying he developed) being rolled out across the country.

Love to know how you get on peiw and RTchoke. Best of luck.

[countrymumkin1]

Hello all.

I have posted this on a couple of other threads, as thought it might be useful. VioletElizabethBott suggested I also post here in case my experience would be helpful to people.

I had a very worrying combined screening results (1 in 33) with 2.1mm nuchal (seen as pretty normal), normal PAPP-A but extremely high HCG (4.4 times average). At age 40 and after a hell of a journey getting pregnant (2 failed IVFs, 4 failed clomid cycles), I had success with a combination of Chinese Medicine, acupuncture and a diet to support my Chinese Medicine diagnosis. We really didn't want invasive testing and my husband found out about Harmony test online after much desperate searching.

The Harmony test is non-invasive, is just a simple blood test and the reliability is extremely high (you wouldn't need to worry at all about reliability). We had the Harmony test and scan 2 weeks ago and I am pleased to say that all went well and the results were fine. This post is just to really say 2 things.

1. If you don't want the invasive tests, call up the Fetal Medicine Centre for a Harmony test (you won't find it advertised on their website as it has only been available for 4 weeks or so). It's only available privately and costs £400 + £150 for scan (you have to have a scan on same day). They are the best in the country and Professor Nicolaides who runs FMC is one of the top Fetal Consultants in the world.
   

1. We found the waiting for the tests results extremely traumatic. It takes 2 weeks and we went to hell and back. I shouldn't think we'll ever be the same again! I know everyone says stay off the internet, but it's very hard to. You're looking for 'someone like me' who's come off ok or for some nugget of insight in a medical report. One great thing we did find whilst googling was the www.arc-uk.org They are Antenatal Results and Choices and offer really good unbiased counselling over the phone- I really found it helped. They don't favour any way of thinking, so are ideal if you want someone to talk to.
   

Hope some of this helps someone that comes onto this board or is on the board already.

Best wishes to you all.

[VioletElizabethBott]

Thank you! There are very few discussions going on about the Harmony test so it's great you've posted your experience here too. all best!

[RTchoke]

I realise I never updated this thread (although I did start other threads on these boards). To help those trying to garner info on Harmony I will post my full story now.

So last time I posted I had been given a 1:10 chance of Down Syndrome following my NHS scan. I could not understand why the risks were quite that high. The baby's nuchal was 3.2mm but by PappA was normal at 1.1 MoM and my HCG was normal at 0.9 MoM. Is 3.2mm enough to give a 1:10 risk and if so what point are the bloods? I am 34.

I went to the Fetal Medicine Centre (FMC) to receive my Harmony results and repeat the combined test (I cannot express how lucky I feel that we chose to have the Harmony before we knew the terrible NHS results). My Harmony results cam back very low risk: less than 1:10,000 for all three common trisomies. The FMC repeated the combined test and could not replicate the NHS nuchal measurement. They measured it 20 times and the thickest measurement was 2.4mm. All other markers were normal and my bloods were the same so I got a revised combined test result of 1:6500. I have never felt so relieved in my life.

I wish I had left it there but the HNS screening midwife kept calling and asking if I wanted an invasive test. She repeatedly warned that the FMC methods were more experimental and did not have the backing of NICE and the NHS. She made me begin to doubt both Harmony and the FMC nuchal result. I could not get the 1:10 out of my mind. Eventually she referred me to an NHS foetal medicine consultant. That consultant was more positive about the Harmony test saying that although it was new it was not experimental. He re-measured the baby's nuchal and it was 2.7mm (why does the damn thing not stay constant????). He did not re-do my bloods or give me a new risk based on 2.7mm. He said all the signs were promising but nothing but a CVS or amnio could guarantee that the first combined test was a false positive.

This is where I have left it. I am 17 weeks now and have not had an invasive test. I still have shaky days where I need certainty and then I have days where I feel total confidence in the Harmony result and the FMC combined result. I will have my 20 week scan at the FMC and if there is a shadow of a hint of a problem then I will have an amnio then.

[katiecubs]

Hi RT.

Both bloods and increased NT can up your risk figures on their own - sometimes the NT is low but bloods flag a problem and vice versa. Differant trusts have differant cut off levels for what is high risk but from what i know anything above 2-2.5mm can increase your results quite considerably. However that said 3.5mm is often is the cut off of the 'normal range', albeit on the high side - i do think a risk of 1:10 considering your bloods were pretty perfect sounds high.

I'm really glad you got better results through the FMC, i have not been there myself but know of many people who have and speak very highly of it. As Prof N. developed the combined test himself i would be much more inclined to go along with what they say. Your risk figures from there are fantastic and i'm sure you have nothing to worry about at all.

Best of luck and enjoy the rest of your pregnancy!

[BadMissM]

Does anyone know if the FMC is the only place in the country offering this? (As I'm at the other end of the country), or are other clinics doing this too? I'm 45 and pregnant with bad experiences of amnio in the past, but having to factor in 2 x trips to London will bump the cost up enormously....

[lily06]

Yes, at the moment the FMC is the only place offering harmony. I'm travelling down on Monday and the train fares are costing me more than the clinic fees. I feel it is worth it as we terminated for downs last year and I think otherwise we would end up going for cvs or amnio this time to be sure even if the nhs scan came back low risk. I'll post back and let you know how we get on.

[lotsofcheese]

Hello again RT just to say that I had an amnio on Monday, on the NHS - and initial results back within 24 hours. My worries & fears about the test were definitely worse than the reality. I agonised about it, as I've had two miscarriages & this is my last go at pregnancy. But it has been the right thing for me.

Hoping everything works out for you x

[BadMissM]

lily06 Yes, I ummed and aaahed about it, as the train fares are more than the test and mine falls on New Year's Eve!! But I just think as I'm 45 it will put my mind at rest. I am so scared of the invasive tests, I had a badly botched amnio in France 15 years ago, on a faulty blood test result. I lost the baby.

I have now booked the 2 appointments at the FMC and the trains (owch), and just have to wait for it now! I can't afford for anyone to go down with me either.

RT It's mainly because I have no confidence in the maternity services around here that I am going to do it... Many of the reasons for last miscarriage were down to them....

lotsofcheese Yep, decided to go for it though it means Christmas is largely cancelled at our house....but I just can't take the chance at my age....

Will let you all know how it goes...

[lily06]

BadMissM I'm just on my way back and they were fabulous. My scan was 30 mins and that was just the viability one but they did nuchal and blood flow etc just as they will when we go back again for the full 12 week scan. They are so knowledgable and there's the opportunity to ask as much as you want to.

I've just booked train tickets for the second scan that came in at £235 - ouch - but I think it will be worth every penny even though the whole costs are more than I earn in a month.

I'm not sure now whether to still go for the nhs scan or whether that will confuse things.

[BadMissM]

Hi Lily06 I'm glad to hear it as because of cost again I have to go by myself for it all.... Was a little nervous....!

I actually managed to get tickets on trainline.com for less. Mine should have been £174 x 2 but managed to get them for £54 x 2 but have to travel on odd days at insane times....

I'm still going for the NHS scan out of pure curiosity I think....

[BadMissM]

Lily06 you must be even further away than I am!