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Dad does clinical trials in memory of daughter

June 18, 2021

A father who is taking part in clinical research trials at NHS Golden Jubilee says he does it in memory of his beloved daughter, in the hope it will help other families avoid heartache.

Alex Cowie, from Ayrshire, has taken part in 3 trials at the Golden Jubilee Research Institute in Clydebank, which is at the forefront of delivering high quality research for patients across Scotland and beyond.

A former Royal Engineer in the British Army, Alex has pulmonary arterial hypertension, a rare, progressive disorder that causes high blood pressure in the vessels which supply the lungs (pulmonary arteries).

It's a serious condition that can damage the right side of the heart and causes shortness of breath, tiredness, dizziness, chest pain and palpitations.

Despite his condition being hereditary, Alex was only diagnosed with it 5 years ago.

His daughter Erika, however, was diagnosed with idiopathic pulmonary arterial hypertension, which has a low life expectancy, when she was 10 back in 2008.

Shortly after his own diagnosis in 2016, Alex’s life changed for ever. Erika sadly lost her battle with the disease and passed away not long after they celebrated her 18th birthday.

Alex, 51, said: “The main reason I put myself forward for doing the clinical trials is because of my daughter.

“They said she would only live for a couple of years after her diagnosis, so she did really well for 8 years. It was such a shock at the time, me getting diagnosed and then she lost her battle. It was really hard.”

After Erika’s death, Alex and partner Joanne moved back to Scotland, where he began receiving treatment from NHS Golden Jubilee at the Scottish Pulmonary Vascular Unit (SPVU).

It was at this stage he began taking part in clinical trials at the Research Institute, in the hope that other families can avoid the pain he has experienced.

“If the clinical trials don’t benefit me, they might benefit someone else and that is my motivation. Overall, there aren’t that many people with pulmonary hypertension so the more data they can collect it might just help somebody one day, so that’s my main driving force.”

Up until his diagnosis, Alex had only ever suffered dizzy spells and never reported any other symptoms.

He said: “I was in the Army, I’ve ran a marathon, I’d always been physically active, I trained and taught martial arts for over 10 years and did mountain biking, so it was quite a shock when I received my diagnosis.

One of the main trials Alex has taken part in is the TRACE study, set up to investigate the effect of the drug Selexipag on a patient's daily life and activity levels, which were assessed by a wrist worn accelerometer - similar to a fitness watch.

Alex added: “I was doing a clinical trial down in Bath and then I started doing one with Selexipag here and that actually changed my whole life compared to what I could do before I started taking that drug for my condition. 

“Other drugs I was on gave me a lot of side effects like sore heads, sickness and tiredness, but now I’m able to go back to work part-time and do a physical job of working on the golf course near where I live throughout the summer.

“I’m now gradually getting my fitness back up to previous levels so it’s been a massive improvement for me and everything seems to be going well at the moment.”

Val Irvine, the Senior Research Nurse leading on the SPVU portfolio of research projects, said: “We are so grateful to people like Alex, who give us their time and support to take part in our trials.

“Knowing why Alex does these trials really does bring home just how important studies like this are, with the potential to make such a huge difference to so many people and their families all across the UK and beyond.”

Head of Research at NHS Golden Jubilee, Dr Catherine Sinclair, said the institute has around 100 active research projects at any one time, ranging from randomised control trials of drugs, medical device trials, and projects which look at different techniques and different ways of working in clinical environments.

Dr Sinclair said: “In addition to the work we are carrying out across our specialities, we are currently going through a recovery phase following on from the COVID pandemic, with a gradual reintroduction of research activity resulting in most research projects now being open to recruitment.

“We are also involved in a number of COVID projects.

“The project that people may have heard about is the Siren project. Most NHS organisations are involved in SIREN which is looking at staff and how they respond to the virus and to vaccination.

“It’s a really interesting project that gives staff the chance to contribute to the understanding of COVID infections, and the body’s response to the infection and to vaccination.”

Today (Friday, 18 June) is Red 4 Research Day, which raises awareness of medical research, and this year it is focusing on the collective research efforts going on to develop new diagnostics and treatments in relation to COVID-19.

Cardiovascular Research Champion Support Manager, Mary McAuley, said: “Red 4 Research day is a day dedicated to show our appreciation to everyone participating, undertaking and supporting research worldwide.”

Dr Sinclair added: “This year has seen sterling work from our research staff - we have seen the strength of our research teams at it’s very best, as they have continued to support patients into clinical trials, while learning new methods of virtual working, and adapting to new modalities in healthcare and have sustained a caring approach to patients and their carer’s and relatives while managing research projects.

“Enriching patient and public involvement into research is a key priority every day. Making our research more accessible and visible to enable patients, so that they are aware of what research is available for their condition to enable them to get involved in research according to their needs is vital.”

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