MEDIA RELEASE

MELBOURNE, VIC – A newly formed research network focused on Batten disease, a rare and inherited brain disorder that primarily affects children, has received funding from the U.S. National Institutes of Health (NIH) to accelerate clinical research and prepare for future treatment trials. 

The network led by Dr. Erika Augustine from Kennedy Krieger Institute, called the Batten Disease Clinical Research Consortium (BDCRC), brings together clinicians, scientists, advocacy groups and research partners including Redenlab, who will contribute expertise in speech and communication science. The BDCRC is now part of the Rare Disease Clinical Research Network (RDCRN), a program that supports research into conditions that are often overlooked and underserved. 

Established in 2024, the BDCRC was created as a US-based academic network to advance clinical research in neuronal ceroid lipofuscinoses (NCLs), the group of conditions known as Batten disease. From the beginning, the consortium sought input from patient communities, families, and advocacy organizations such as the Batten Disease Support and Research Association (BDSRA) Foundation to help shape its research priorities and ensure that the work reflects the needs of those most affected. 

As part of this collaboration, Redenlab will help develop new tools to track changes in speech and communication, which are commonly impacted as Batten disease progresses. These tools will play an important role in future clinical trials, helping researchers understand whether new treatments are having a meaningful effect on daily life. 

The BDCRC includes leading researchers and clinicians from academic institutions across the United States, alongside international collaborators and foundations that have long supported Batten disease research. 

About Redenlab: 

Redenlab is a leading health technology company specialising in clinical speech analytics. With a mission to optimise decision-making in clinical trials and healthcare research, Redenlab leverages leading knowledge in communication and technology to measure and analyse speech patterns, providing valuable insights into brain health. Their clinical outcome assessments have led the field by changing how we identify and monitor disease. The technology is used by the world’s leading pharmaceutical and biotech companies across 25 countries and over 350 sites. 

For media inquiries, please contact: 

Gloria Macan 
Chief Marketing Officer 
Redenlab 
Gmacan@redenlab.com