As the Programme Manager here at TwinsUK, I wanted to share a little behind-the-scenes look at how our study has evolved over the years, not just in terms of the science, but also how we’re governed and how we work with our amazing twin volunteers.
A Quick Intro to TwinsUK
For those who don’t know, TwinsUK is a UK adult twin registry and one of the most clinically detailed longitudinal twin studies in the world. We’ve been around since 1992 (yes, we’re over 30 now!) and are based at King’s College London, with support from Guy’s and St Thomas’ NHS Foundation Trust.
At the heart of TwinsUK is our longitudinal study: twins come in every four years for a clinic visit, where they do a bunch of health checks and provide samples: blood, urine, stool, saliva, you name it. These samples and data are stored for long-term health research and shared with researchers through managed access. On top of that, twins can also take part in smaller sub studies, either during their regular visits or at other times.
From Study to Tissue Bank…
In the early days, we were governed as a traditional “basic science study” under the Health Research Authority (HRA). That meant every single sub-study needed its own ethics application or a detailed amendment. It worked, but it also meant our twins were getting bombarded with long information sheets and consent forms, even when their visits were pretty much the same.
So in 2018, we switched to a Research Tissue Bank (RTB) model. This was a game-changer. It allowed us to run the core study and add sub-studies more easily. Twins got a single overall information sheet, short one-pagers for sub-studies, and just one broad consent form. Much simpler!
…to Programme of Research
Fast forward to 2023, and the HRA told us the RTB model wasn’t quite the right fit anymore. TwinsUK had grown into something that was more than a study, but not just a tissue bank either. So we joined a pilot for a new governance model: the ‘Programme of Research’.
This new model lets us apply for ethical approval for a wide range of research activities, whether they involve all twins or just a few. We can now add sub-studies with a light-touch amendment, and most importantly, we keep things simple for our participants. One main info sheet, short one-pagers for sub-studies, and one broad consent form. Easy! We ran this by our Volunteer Advisory Panel (our brilliant PPIE group), and they were all for it. Some of them have been with us for years and still remember the “reams of paper” days, no one wants to go back to that!
Where are we now?
In 2024, we officially became the second approved Programme of Research in the UK. We also renewed our RTB to keep storing and managing our data and samples long-term. Right now, we’re running 9 sub-studies under the Programme of Research, with a 10th on the way.
We’re incredibly grateful to King’s and GSTT for supporting us through all these changes. It’s helped us stay flexible, reduce participant burden, and keep pushing forward with exciting, impactful research. Thanks for reading, and thank you to all our wonderful twins for being part of this innovative journey!