Type 1 Screening

[Natalie1974]

Thanks to @catapillar...I've just come across a link to a screening program called Trial Net for relatives of Type 1's and contacted them to enquire about getting my daughter signed up. Just wondering if anyone else has done this and what your thoughts are on this?

Link for anyone that's interested
http://www.diabetestrialnet.org/

 

[Juicyj]

Thanks to @catapillar...I've just come across a link to a screening program called Trial Net for relatives of Type 1's and contacted them to enquire about getting my daughter signed up. Just wondering if anyone else has done this and what your thoughts are on this?

Link for anyone that's interested
http://www.diabetestrialnet.org/

I have just read this to and clicked the link, in the UK we have to book an appointment direct: http://www.diabetestrialnet.org/locations/index.htm

I am interested in getting my daughter tested but as she's still quite young I don't think she would be, however will definately be looking into this further.

 

[Natalie1974]

Hi @Juicyj
I must admit it wasn't an easy site to navigate...I ended up giving them a call. They are an American based company, although they have several UK centers...none of which are any where near me...that would be too easy wouldn't it. In these cases after getting consent forms completed etc they send you out a test kit so that you can go and get bloods taken at your doctors...apparently free of charge but they are apparently willing to pay up to £25 should you be charged.

I've discussed it with my daughter this morning...she is now approaching the age that I was when diagnosed and I guess she's a little bit curious...but also a little apprehensive. We're going to do some reading up when the literature arrives and then make a decision...just really wondering if anyone else had tried this and what the outcome was.

 

[Juicyj]

I am also curious for my daughter, but thinking about it, if she did test positive for the anti bodies not sure what we would think then ? It's one of those situations where a little knowledge may be a dangerous thing as it could be an extra worry. At the moment as a type 1 myself I would be very aware if she displayed any symptoms of it so can always keep an eye on it, it does cross my mind from time to time that she could also be diagnosed but don't want to plant the seed of doubt in her mind of this either. She is only 8 so quite young and I don't want her to have anything to worry about.

 

[Natalie1974]

It's really got me thinking now...

My daughter is a fair bit older...she'll be 23 next month so perhaps a bit different.

It does make me ponder the questions...would I as a 23 year with a passion for chocolate really want to know...is it better the devil you know...or ignorance is bliss?? Would I change anything? Would I eat better? Drink less? Would I live in a state of constant paranoia?

However...there is also some information on their site in regards to preventative treatments and a number of trials currently being undertaken in people testing positive in order to delay or prevent the onset of Type 1. It poses a lot of questions...and probably a lot of soul searching coming up

 

[tim2000s]

To be fair though, does she need to go through TrialNet to get tested for the GAD and ICA antibodies? Surely those are tests that the GP can do (and may charge a fee for)?

 

[Natalie1974]

To be fair though, does she need to go through TrialNet to get tested for the GAD and ICA antibodies? Surely those are tests that the GP can do (and may charge a fee for)?

No...perhaps not...but to be honest it's the first time I've ever given it any real consideration...and was the first one I came across. They did say that 95% of the time these tests come back negative and if they're willing to do it free of charge...then maybe it's worth giving it some thought. We'll certainly see what is involved before going ahead with it.

 

[tim2000s]

if they're willing to do it free of charge...then maybe it's worth giving it some thought.

Ah - I thought Trial Net charged for the service.

 

[Natalie1974]

Ah - I thought Trial Net charged for the service.

No...not at all...as far as I can make out at the moment anyway...if I discover any hidden charges I will keep this thread updated.

 

[Hannah3003]

Hi Natalie. When I was diagnosed earlier this year (at 23) my local hospital offered my sister and first cousins under the age of 40 the chance to have a blood test and find out their risk of developing Type 1. It sounded more like a percentage chance of developing it but as my sister (who's 21) would rather not know I don't know the specifics. Apparently it's a free trial carried out internationally, it might be worth asking when you next appointment there. It was just one consultant and a specific nurse who were running it though


Sent from my iPad using DCUK Forum mobile app

 

[catapillar]

Ah - I thought Trial Net charged for the service.

They don't charge - they send consent forms & instructions for the blood draw - you just need to find someone to draw the blood & your GP will probably do this for free. Then you send the bloods to one of the Uk centres. Trial net aren't charging, they actively want as many participants as possible so that they can have a full research database. I think they are working on a system where you can do the blood draw at home - so it essentially just a big finger prick test, but that is only in the works.

I think taking part in trial net has two major benefits for the participant:

1. You're taking part in a study on the causes of & cures for type 1 - furthering research into this = good for your loved one with type 1, you are helping to find a cure (alright, it quite an abstract, far in the future kind of way, but everything has to start somewhere)
2. You find out about your risk of developing type 1, if a risk is flagged, they follow you up annually or more closely depending on the level of risk and put you forward for trials with the aim of preserving/prolonging beta cell function. My understanding is they try to pick up the onset of type 1 well before you would be symptomatic - basically, once you are positive for two of the antibodies they treat as if type 1 is certain and then start considering therapeutic options to preserve beta cells.

But of course, every ones different and it's got to be an individual (or, for a child, their parents) decision. Knowing about a risk - especially if it's a risk you have this all too close understanding of because you've grown up with t1 in the house - could definitely be pretty daunting prospect & I can see the benefits to the individual of not participating too.