Meet Trial Coordinator Debbie Miller

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Our Trial Coordinators play a key part in supporting participation in CF clinical trials. We spoke to Debbie Miller, Early Phase Trial Coordinator in Edinburgh about her role.

Tell us about your centre

The Western General Hospital in Edinburgh is one of three centres in Scotland that cares for 282 adults with Cystic Fibrosis (CF). The centre provides outreach hospitals in Dundee and Raigmore, so covers a wide geographical area. Our paediatric service looks after around 150 children with CF.

What does your role as an early phase trial coordinator involve?

This is a new role established by the Trials Accelerator Platform. I was the first early phase co-ordinator to be appointed with another five becoming established around the UK. My role supports the set-up, co-ordination and the smooth running of early phase studies.

The best part of my job is being ‘hands on’ with patients and their families - supporting them through the research process making it as easy and as enjoyable as possible. I also enjoy knowing I played a small part in delivering high quality research and seeing the drugs medicines now licensed for use on studies I’ve have worked on.

How are early phase trials different from other trials?

Early phase trials are the first steps to researching testing a new drug medicine or treatment. This is an important stage of development looking at how safe the drug medicine or treatment is and if there are any side effects. These are generally very short intense studies involving only small numbers of participants and can involve a lot of testing. The information gained then helps to progress the drug medicine or treatment in later phases to see how well it actually works in the patient population.

Early phase studies also apply to children when it is the first time the drug medicine has been tested in that particular age group as again the impacts risks are unknown.   

Do you find that patients are more concerned about taking part in early phase trials?

Early phase studies can be riskier than other trials because there is less information known about the drug medicine and the effects on patients. Ensuring that patients are safe is the most important part of all research, but especially for early phase studies which like all  and the studies will have gone through many processes to make sure they are as safe as possible.

Understandably if there is less information about a drug medicine or treatment there may be more concerns. Taking part is not for everyone and we make sure that there is no pressure for people to take part. Participation is always voluntary and people know they can withdraw from the study at any time should they decide to go ahead.  People who do take part often want to play their part in trying to help change and improve care for the wider CF population.

The research team are there for participants and will follow and support them throughout their journey.

What areas of CF research are you excited to see develop?

I’ve been fortunate enough to see the implementation of modulator therapies within my career and the positive impact it has had for some patients with CF. There are many areas of CF research being funded that are trying to tackle the disease condition from every angle and looking at treatments for all patients no matter what their genotype – it will be exciting to see how these therapies develop especially gene therapy and  gene editing and more personalised and precision-based treatments.

The future is looking busy from a CF research perspective. Watch this space for new trials to come on board.

If you would like any further information on taking part in clinical trials contact your local Trial Coordinator.

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