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:
- 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)
- 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.