A spotlight on Nanette
Clinical Trials Manager - Neurofibromatosis, Department of Clinical Genetics, Royal North Shore Hospital
About Nanette:
Nanette is a registered nurse with extensive postgraduate experience in paediatrics, clinical trials, and critical care nursing. She has held key positions including team leader and preceptor to junior staff members in both her research and nursing roles. Her career spans a diverse range of settings, including academic, institution-initiated studies, collaborative research projects, and commercial clinical trials from Phase I to Phase IV.
This diversity has provided her with a unique perspective on the healthcare and research landscapes, enabling her to tackle critical problems and contribute to the fruition of innovative ideas. She has successfully driven change in various public health sector roles. Her efforts and passion on defining the best treatment protocols for diverse patient populations and advocating for equitable access to emerging therapies through involvement in clinical trials and goal that public benefits from new remedies during their development phases.
A significant aspect of Nanette's career has been her involvement in Neurofibromatosis (NF) research in Royal North Shore Hospital’s Department of Clinical Genetics. Her passion for improving NF patient outcomes and finding effective treatments has driven her work in this field. She has recently been involved in MEK inhibitor treatments for symptomatic plexiform neurofibromas, which has shown promising results.
Additionally, she has also been a part of various research projects involving imaging techniques and quality of life assessments of NF patients which are contributing valuable insights into the impact of cutaneous neurofibroma therapies. Another key area of her research is the efficacy of L-carnitine in children diagnosed with NF who experience muscle weakness and fatigue.
An interesting fact about her is that she was previously a restaurant-cafe owner and barista in Auckland City prior to moving to Sydney.
What attracted you to work in the NF space?
I was drawn to work in the field of Neurofibromatosis (NF) because of the profound impact this condition has on individuals and families.
The complexity of NF, with its wide range of symptoms and challenges, presents a significant opportunity for meaningful research and clinical work. As a nurse, trial manager, and research coordinator, I am enthusiastic about providing comprehensive care and advancing the understanding of NF.
The opportunity to collaborate directly with patients, support cutting-edge research, and collaborate with resolute professionals in this field is incredibly fulfilling. Being able to contribute to advancements in understanding and treating NF, and to potentially improve the quality of life for those affected, motivates me every day.
What NF research or other projects do you work on? What do you hope to achieve?
As a nurse, trial manager, and research coordinator with a focus in the field of NF, I am currently involved in several key projects.
One significant initiative is a clinical trial to evaluate the efficacy of L-carnitine in patients with NF who experience muscle weakness and fatigue. This trial is now enrolling patients aged 8-12 years, aiming to provide new therapeutic options for young patients struggling with these debilitating symptoms. Additionally, I participate in projects related to the quality of life assessment, NF1 registry and various imaging techniques aiming to identify new targets for therapeutic intervention.
Collaborating with interdisciplinary teams, we also explore innovative approaches to patient care and support, including psychological and social aspects. Our goal is to develop comprehensive treatment plans that address both the physical and emotional needs of our patients and their families.
My primary goal is to contribute to significant breakthroughs in the treatment and management of NF. This includes finding effective therapies that can reduce or eliminate the symptoms of NF, improving diagnostic techniques, and enhancing the overall quality of life for patients. By conducting rigorous clinical trials, such as the L-carnitine study, we aim to discover new treatments that can alleviate muscle weakness and fatigue in young patients.
I also aim to raise awareness about NF and advocate for increased research funding and resources, ensuring that NF patients receive the best possible care and support. Ultimately, I hope to see a world where NF is no longer a life-limiting condition, and where patients can live healthy, fulfilling lives.
In your opinion, why does NF need more support?
NF is a complex and often debilitating condition that affects many aspects of a person's life. Despite its prevalence, NF remains under-researched and underfunded compared to other conditions. More support is needed to drive research that can lead to new treatments and a cure.
Additionally, increased funding can improve patient care, provide better educational resources, and support services for families coping with NF. Greater awareness and understanding of NF can also reduce the stigma and isolation that patients and families often experience. By supporting NF research and advocacy, we can make significant strides in improving the lives of those affected by this condition
What role do you think the Children’s Tumour Foundation plays in supporting NF families?
The Children’s Tumour Foundation (CTF) plays a crucial role in supporting NF families by providing vital resources, information, and advocacy. CTF funds important research, supports clinical trials, and offers educational programs to increase awareness about NF.
They also provide a network for families to connect, share experiences, and access support services, which can be incredibly valuable for coping with the challenges of NF. Through their efforts, CTF helps to bridge the gap between patients, families, researchers, and healthcare providers, fostering a community of support and collaboration. Their work is instrumental in advancing research, improving patient care, and advocating for the needs of NF patients and their families.
Learn more about the strength study
For those interested in getting involved in Royal North Shore Hospital’s ongoing research and clinical trials, please email NSLHD-Neurofibromatosis@health.nsw.gov.au or phone 9463 1727.