Please complete this survey if you are over 16, live in the UK and have a diagnosis of pulmonary hypertension.

To help guide treatment for patients from their own home and to help balance the benefit of therapies against side effects, researchers are aiming to set up a study looking at the use of cutting-edge, remote monitoring technology that can provide daily data similar to that gained from a right heart catheterisation. This data will be provided wirelessly to the hospital team via mobile phone.  

Implanted at the time of right heart catheterisation, one small device (3.5x2x15mm) will sit in the pulmonary artery and the other (9x3x49mm) just under the skin on the chest. Devices are safe and are approved for the treatment of heart failure and for the detection of abnormal heart rhythms.

An early study undertaken in Sheffield shows that they may be used to guide therapy long-term in patients with PH.

In this second proposed study, to be run at all UK PH centres, researchers aim to understand the best treatment for patients on two PH drugs by undertaking a study increasing and decreasing doses of two approved drugs known to provide benefit. During the study, researchers will seek to demonstrate the use of devices for ‘personalised medicine’ by examining the changes in pulmonary blood pressure and blood flow, heart rate, physical activity, side effects and quality-of-life with changes in drugs.

The study is focused on the treatment of PAH at this point, however there is significant potential for use in patients with other forms of PH.

This survey is being conducted in collaboration with Dr Alex Rothman and Dr Jen Middleton, both cardiologists at Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield Pulmonary Vascular Disease Unit and The University of Sheffield. They will be leading the study if approved.

To help secure funding for the study, researchers would like to know whether it will be valued by the PH community. Please share your thoughts below.  

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* 1. What is your gender?

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* 2. What is your age?

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* 3. What type of pulmonary hypertension (PH) do you have?

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* 4. How important do you think a study would be that looked into the use of implanted devices to provide data that will help patients get the most from their PH treatment? 

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* 5. How interested would you be in the results of a study that looked into the use of implanted devices to provide data that will help patients get the most from their PH treatment? 

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* 6. The proposed study aims to help patients benefit from the right mix of treatments for them, balancing clinical benefit and side effects (known as ‘personalised medicine’). How important do you think this aim is?

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* 7. The proposed study also aims to minimise visits to specialist centres by enabling data to be sent directly to specialists from patients’ homes. This would cut down on travel time and expense for patients and enable specialists to monitor treatments more often and more closely. How important do you think this aim is?

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* 8. Patients that take part in the study would have two small devices implanted during a right heart catheterisation. One would sit in the pulmonary artery and the other just under the skin on the chest. Patients would be required to send daily data to their specialist team via their mobile phone. How interested would you be in taking part in the study?

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* 9. Do you have any other comments relating to this survey?

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* 10. If the study is approved, would you be interested in finding out more about taking part? If so, please leave your name and preferred contact details below. These details will be passed to the researchers.  

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