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'If I didn't take part in a clinical trial, I would have died'

Patients in Ireland are being encouraged to ask their doctors about clinical trials.

PATIENTS IN IRELAND are being encouraged to ask their doctors about clinical trials.

There has been a steady increase in the number of open trial sites across research centres in Ireland in recent years, up from 143 in 2014 to 237 in 2017.

Eighteen hospitals and 333 investigators were involved in clinical trials in Ireland last year, according to statistics from Health Research Board Clinical Research Coordination Ireland.

Figures from the Health Products Regulatory Authority show that 96 new clinical trials of human medicine and nine new clinical investigations for medical devices were approved in Ireland in 2017. 

However, many people aren’t aware of this and patients often assume they are not eligible for a clinical trial or don’t think to ask. 

Avril Kennan bio pic high res (1) Dr Avril Kennan Source: MRCG

Dr Avril Kennan, Chief Executive of the Medical Research Charities Group (MRCG), said people in Ireland are “particularly bad at asking doctors about research”.

She said patients shouldn’t be shy about asking their doctors about clinical trials.

“When it comes to our care, we should be asking what the latest research is and if there are any clinical trials happening. Instead we usually feel that we have already taken up too much of their time and shuffle off.

Sometimes clinical trials are the only way to access innovative medicines that might otherwise take years to become available.

Kennan added that international research has shown that people taking part in clinical trials, even those receiving a placebo, tend to receive better care than other patients. 

“Unfortunately, in a health service under pressure, there is too little time for healthcare professionals to engage in research. We need to start seeing research as an intrinsic part of care, instead of a luxury add-on,” she said. 

The MRCG’s membership comprises 39 charities active in medical research including Cystic Fibrosis Ireland, the Irish Cancer Society and Fighting Blindness.

Since 2006, the MRCG and the HRB have operated a joint funding scheme based on the dedicated allocation of funding to the HRB by the Department of Health.

More than 100 projects have been funded, receiving up to a maximum of €300,000 for research over 12 to 36 months.

Last month it was announced that €3.2 million would be spent on developing 14 new projects

Orkambi 

Cystic fibrosis campaigner Jillian McNulty believes she would not be alive today if she had not been able to access the groundbreaking therapy Orkambi through a clinical trial, prior to its introduction here last year

Before she started the trial, McNulty was in hospital every four or five weeks, sometimes for up to 12 or 13 weeks at a time, adding up to eight or nine months a year in hospital.

0972 Cystic Fibrosis_90508542_90508885 Jillian McNulty Source: Leah Farrell/RollingNews.ie

“I was looking at a possible lung transplant which was a little scary. Since taking the therapy, my health has hugely improved.

I firmly believe if I had not been on the trial, that I would have died battling infections, including swine flu and influenza A and B.

“I can now live my life instead of just surviving day-to-day from a hospital bed. I never imagined when I started the trial that it would completely transform my life, but it has. I would urge people to find out all they can about the clinical trials relevant to their situation,” McNulty said. 

AWARE for All 

Kennan and McNulty are both due to speak at a free information seminar about clinical trials this week. 

The AWARE for All event, which is being organised by the Centre for Information and Study on Clinical Research Participation (a US non-profit organisation), will take place in the Trinity Translational Medicine Institute at St James’s Hospital on Wednesday from 5pm to 8pm.

The event will include talks and panel discussions featuring doctors undertaking clinical trials and patients taking part. People will learn what clinical trials are, how they work, and how they inform public health, while also being advised about the safety, benefits and risks of participation.

More information can be read here

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Órla Ryan

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