Cardio Vascular Risk Research
TAKE PART IN RESEARCH – NEW STUDY
We are delighted to announce the launch of a major new research partnership with the Royal National Orthopaedic Hospital (RNOH) and we need you to take part.
"You can help us to understand and improve the health of the Thalidomide community in the UK and across the world."
What is the research about?
The research study is designed to understand how accurate blood pressure measured in the leg is. It will also look at what constitutes a normal blood pressure for someone with thalidomide damage.
Why is it important?
Many of you have difficulty having your blood pressure taken, especially those of you with short or no arms. This is a concern as the risk of developing cardiovascular disease increases as you age. Accurately measuring your blood pressure is a key part of understanding your risk of developing this disease and possibly having a heart attack or a stroke.
Some of you have your blood pressure measured in your leg. But we don’t currently know how accurate this is. This means that we can’t be sure that this way of taking blood pressure is reliable in understanding your risk of cardio-vascular problems.
What do I have to do to take part?
You have to be having surgery to take part in this study
The study will compare your blood pressure in your artery (the most accurate measure) and your blood pressure in your leg when they are taken at the same time.
As having your blood pressure measured inside your body is an invasive process it’s much easier to do it when you are under general anaesthetic. Of course we’re not going to ask you to volunteer for an unnecessary general anaesthetic, but we do want to know when you are going to be having an operation so that we can ask your anaesthetist to share the blood pressure readings that they would be taking anyway whilst monitoring you during surgery. That way, you’ll be able to take part in the study without having to undergo any additional procedures or travel – or even being aware of it!
If you decide to participate we will simply ask your anaesthetist to share your blood pressure readings during, and immediately after your surgery, so that the RNOH can analyse how readings taken with an external blood pressure cuff compared with the intra-arterial line used to record blood pressure inside your body.
What’s in it for you?
Everyone who takes part in the study will get a personalised report comparing your intra-arterial blood pressure with your external blood pressure, so you can see if there are any differences, and get a clear picture of what your genuine blood pressure reading is. You may choose to share this with your GP to help determine your risk of cardio-vascular disease.
I am interested – what next?
Just contact the Trust and let us know if you may be having an operation in the near future and are interested in finding out more.
Even if you don’t have a date for an operation yet, or are not certain you will definitely need one, please let us know so we can keep in touch as the study will continue for at least 3 years.
We will put you in touch with someone to talk you through the study in more detail so you can decide whether you want to take part. If you do, we’ll contact your consultant and anaesthetist on your behalf. There is no commitment at this stage and you can change your mind at any time.
I don’t have arms or legs – can I still take part?
Yes – your results won’t count towards the study but we can still provide you with your accurate blood pressure measurements which you can then share with your GP if you wish.
Who is involved?
The clinical lead on this research is Dr Rachel Baumber - Consultant Anaesthetist at RNOH. She will be advising your medical team.
You will also be supported by a team from the Trust: