Get to know NF Researchers in Australia - Dr Hayley Dark 

CTF Australia welcomes the opportunity to introduce Dr Hayley Darke to our NF community. Dr Darke is a research neuropsychologist at the Murdoch Children’s Research Institute (MCRI) and works as a clinical neuropsychologist at the Neurofibromatosis Clinic at the Royal Children’s Hospital in Melbourne.

She takes part in clinical trials that test new treatments for neurodevelopmental conditions and is passionate about using proven research results to help patients. She has a specific interest in cognition, learning and social functioning in children with NF1, and coordinates the ongoing Tap-iN trial at MCRI which is studying ways to help primary school children with NF1 who have trouble processing sounds.

You can learn more about the Tap-iN trial in CTF Australia’s post about her presentation at the NF Clinical Symposium 2025. We also thank Dr Darke for her interview, where she shares what inspires her to support children with NF1 and their families.

“Almost half of kids with NF1 have significant difficulties understanding speech in noisy environments, like a classroom”

How did you become interested in NF1?

My first introduction to NF1 was during a university lecture on neural development, which explained how the skin, nerves, and brain are closely connected in early development. A few years later, in 2018, I began volunteering with the NF team at the Murdoch Children’s Research Institute. Fortunately for me, they haven’t been able to get rid of me since.

Can you tell us more about the TAP-iN trial in general and your specific role in this research study?

Almost half of kids with NF1 have significant difficulties understanding speech in noisy environments, like a classroom, compared to others their age. The goal of the TAP-iN trial is to investigate whether a remote listening device helps these children to hear and focus more easily when worn in the classroom.

My role in the study is the trial coordinator. This involves recruiting participants into the study, organising and conducting study visits, and working together with teachers and families to ensure the trial runs smoothly. I also get to analyse the data and start looking at the trial results, which is the exciting part!

What benefit is this clinical trial hoping to bring to NF1 patients?

There is currently no officially recognised treatment or assistive technology to help children with NF1 that have difficulties clearly hearing speech when it’s noisy. Our hope is that this device might make a real difference in helping kids with NF1 get the most out of their classroom learning.

What is the your biggest challenge? Can you explain some of the issues you are facing in this research study?

Like many researchers studying NF1, one of our biggest challenges is recruiting enough participants into the trial to show whether the device is effective. We are extremely grateful to all the families who have contributed their time and effort to supporting our research. With that said, we are always on the lookout for individuals with NF1 who might be interested in taking part in one of our studies!

Are other researchers (in Australia and beyond) also interested in this topic and do you work together?

We are collaborating with the team at The Children’s Hospital at Westmead, which means the TAP-iN trial is currently open to new participants in both Sydney and Melbourne. We are also exploring opportunities to expand the trial internationally, with the goal of broadening recruitment and increasing the study’s reach.

What would you like to see happen for NF1 patients?

I’d like to see NF1 patients benefit from earlier diagnosis, greater awareness in the wider community, and more timely access to supports and interventions.

You can read a summary of Dr Darke's presentation here for Patients and Carers here.

Or for a more scientific version, please see the summary for Health Care Professionals here.