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In profile: Family drives ongoing passion for clinical trials

July 30, 2021

Nicole Fairweather has no doubt, clinical trials saved her son’s life.

He suffers from Paroxysmal nocturnal hemoglobinuria (PNH), a very rare, life-threatening disease of the blood, that could only be treated through a bone marrow transplant or immunotherapy. And even then, his quality of life wasn’t guaranteed. 

But many years ago, a researcher decided to trial a drug that would make all the difference. A decision Nicole and her family are eternally grateful for. 

“We are very, very lucky that someone developed this drug that could treat my son’s condition. Especially because it’s such a rare disease - I’m just so grateful that a researcher took the time and effort to make it happen. It enables my son to live a normal life, but without it, who knows what his outcome would have been,” Nicole said. 

PNH affects about 100 people in Australia. The drug was approved by the lifesaving drugs committee and is now provided to anyone who meets the criteria.  

It’s that personal, family experience with clinical trials that continues to drive Nicole’s passion for medical research. She’s worked in clinical trials for more than 15 years, and now leads the Clinical Trials team at Peninsula Private Hospital. 

“I love the fast-paced environment of working in trials and I enjoy being able to provide patients with options for treatments and to make informed choices about these options,” she said. 

“It is fantastic that Ramsay, as a private healthcare provider, is supportive of clinical trials and is enabling clinicians to offer them to Ramsay patients.  At Peninsula Private Hospital, we currently have 11 haematology trials open to recruitment across all trial phases and three studies with patients in follow up. 

“These clinical trials give patients who may have limited options, or who have exhausted all treatments, the ability to continue active treatment for their disease. It may also give them the ability to better understand diseases and the impacts of their disease to guide future treatment options”. 

Nicole believes the COVID-19 pandemic has really highlighted the importance of clinical trials. 

“The global pandemic of COVID-19 has proven how necessary trials are to have options to treat and vaccinate the healthy wider community, with the intent to save lives,” she said. 

“That’s why we do what we do. It’s about developing what’s best for the patient. A lot of the people I meet, the trial is their last option, but they also see that they’re helping those who come after them. They know the risk and they’re willing to put themselves out there for that. I think they’re incredible.” 

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