We’re kicking off 2022 with a new fundraiser – Bring TAPS Research to Liverpool! Why is this important, and why does it matter that we need to have more centers involved in research??
UPDATE! We’ve handed over £2800 so far to Liverpool Women’s Hospital Charity – but we still need more!
Find our Facebook fundraiser here, or donate below.
Read on to discover why we want to turn the home of pop music, shipping, and of course, famous football clubs into a home for TAPS research as well.
Read more about Twin Anemia Polycythemia Sequence (TAPS) here
Continuing TAPS Research
Right now, there is a lot of controversy about treatments for TAPS, and there is no consensus on what the best treatment is. The TAPS Registry showed us that worldwide, centers take different approaches, and this is not standardized. Currently, the best clinical practice is that each case of TAPS is treated on an individual basis, taking into consideration the gestational age and severity of the TAPS and that all treatment options are discussed with the parent/s so they can make an informed decision.
Liverpool Women’s Hospital
With roots going back to 1796, the Liverpool Women’s Hospital has been a leader in women’s health and research in the United Kingdom. They specialize in the health of women, and their babies both within the hospital and in the wider community. As the largest women’s hospital of its kind, its passion lies in promoting and improving the health of everyone who comes into their care.
They are no stranger to research and clinical trials, and as a teaching hospital, they are also committed to bringing the future of medicine and working with the University of Liverpool to deliver high standards of training for medical professionals of tomorrow.
Learn more about Liverpool Women’s Hospital on their website here.
Why Bring TAPS Research to Liverpool Women’s Hospital?
The theme of International TAPS Day this year is “Connections”, and it’s important to highlight the importance of connecting not only patients to each other, but extending this to connecting care teams to each other, and creating international collaborations on clinical trials.
Our plan is to raise £5000 pounds to give to the Liverpool Women’s Hospital NHS Trust in order to bring this vital clinical trial to Liverpool. We believe so passionately in this project that we’ve kicked off the fundraising with £2000 from our own research fund.
That’s how important continuing TAPS research is to our foundation. We believe that collaboration and cooperation will bring answers to our families. It’s all about the connections in TAPS.
Connecting TAPS research in the Liverpool Women’s Hospital means that more data can be collected on the best treatment for TAPS, and then families can make informed decisions about their babies, and the treatment options they can take advantage of.
“TAPS is a relatively new and uncommon condition which can complicate monochorionic twins. At present there is significant uncertainty about how to manage pregnancies affected by TAPS which leads to variation in practice between clinicians and in the counselling offered to parents. We urgently need to know more about how best to manage TAPS to minimise the complications of this potentially a very severe condition.”Dr Andrew Sharp, Clinical Lead for Multiple Pregnancy and Fetal Growth, Liverpool Women’s Hospital.
Connecting doctors to each other, and to the latest research is vital to continue to raise TAPS awareness.
Parent Voices: Research Needs To Continue
Without research, TAP families find themselves in a world of confusion about treatments and outcomes. Reliable information is hard to find, and there are many conflicting things said about TAPS. TAPS Support works with doctors and researchers, as well as patients to make research accessible to everyone.
We need more information to be able to make decisions on our treatment. Nichola Luther shares her story here and emphasizes why we need more research.
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