On December 3rd last year, Emilia and I signed up for TrialNet, giving a small blood sample at the Bournemouth Diabetes and Endocrine Centre. We were quite nervous about the day and even more nervous about the result which we wouldn’t find out for ages.
It could take up to three months, it took almost that.
The results arrived yesterday by letter.
Both of us are negative; that’s a good thing.
Affecting the whole family
Only yesterday did I understand the full impact of the anticipation of the result.
Jane text me to let me know the letters had arrived so I’d already figured out that we’d both be negative, otherwise we’d have had a phone call to discuss the results. Arriving home I opened the letters to check and took Emilia’s result to show her, but I bumped into Amy first. Amy read the letter and the look of relief of her face surprised me, she was so relieved that her sister was in the clear for at least a while longer. I don’t know why I never realised how much this would affect Amy, I wish I had as we could have discussed her worries.
Emilia whilst pleased with the result said that it just meant she had a year of not worrying, that she’d have to go again in a year. Clearly no celebration as such, just a mild relief, but we discussed that she doesn’t have to go every year, unless she chooses to. I think she will.
What’s next in the trial?
As part of the trial they’d like to retest Emilia in December, one year after her last test.
For me it’s all over as in December I’ll be too old to take any further part in the trial.
Want to find out more about TrialNet
If you want to find out more about TrialNet visit the UK web site here.
Today, Emilia, myself and a friend are taking our first steps into clinical trials called TrialNet to see if it’s likely that we may develop Type 1 Diabetes soon.
I think it’s fair to say that we’re all slightly nervous.
What it TrialNet?
TrialNet is a global research project into how Type 1 Diabetes occurs. There are centres in many countries, with Bristol being the main one in the UK but with others joining in including Bournemouth where we’re going today. I believe Portsmouth which is also local to us will be joining in soon.
I first found out about TrialNet via the #DOC (diabetes online community) but it was only following a talk by Dr Kathleen Gillispie at the JDRF Discovery Day in Bristol in April that I started looking into it properly.
Do I really want to know?
Once I started looking at TrialNet the question arose of whether I really wanted to know the answer it might provide.
Quite simply the answer is ‘yes’, although it’s taken me months of questioning myself to make sure I’m sure about this.
The result could go either way but it’s more likely Emilia and I will get the all clear and that would save a few years of worrying. If it turns out either of us are positive for the antibodies then we can proceed on to Stage 2 of the trial, if we choose. It’s important to note that we can opt out at any time.
Initially I signed up, hoping that Emilia might choose to but not really expecting that to happen. I’m pleased that she’s decided to come too as I’m sure she’s been silently worrying about her chances of getting Type 1.
The ‘Natural History Study’ trial
We’re taking part in the Natural History Study where anyone between 5-45 (yes I am young enough, just) with a parent, sibling or child can take part. It’s also open people aged 5-20 who have a cousin, aunt, niece, nephew or grandchild. Quite how a twenty year old can end up with a grandchild with Type 1 I can’t quite work out but presumably if a grandparent has Type 1 and the parents are too old to take part any grandchild can.
We’re visiting the Bournemouth Diabetes and Endocrine Centre today as it’s only 45 minutes drive away but if you don’t have a local centre then you can send your blood sample via post; contact your nearest TrialNet centre to discuss the options.
Helping each other
I know very little about clinical trials but I’ve always imagined that they’re all about the research and little about the person taking part. With TrialNet this definitely isn’t the case as all three of us will ultimately find out whether we’re likely to develop Type 1 Diabetes soon or not.
More importantly we’re helping the trial and I feel this is vitally important to help the scientists learn more and ultimately find a cure or preventative medicine.
Want to find out more about TrialNet
If you want to find out more about TrialNet visit the UK web site here: http://www.bris.ac.uk/trialnet-uk/index.html.