Wearable Digital Data Collection Is On the Horizon: Meet BioSensics
KIF1A.ORG is thrilled to announce an exciting new initiative to enhance our natural history study and accelerate progress toward clinical trials: wearable digital data collection in partnership with BioSensics, a leading innovator in digital health monitoring for rare diseases.
As part of our efforts to strengthen the KOALA Study—the most comprehensive natural history study of KIF1A-Associated Neurological Disorder (KAND)—we are now piloting cutting-edge wearable devices to gather continuous, real-world data from patients at home. These devices are designed to capture critical metrics such as:
- Movement
- Gait
- Balance
…and more.
How It Works
Patients are first evaluated in-person during KOALA study visits at Boston Children’s Hospital. After their visit, they are sent home with these lightweight, non-invasive wearable monitors provided by BioSensics. The devices passively record vital data over time, painting a fuller picture of each patient’s day-to-day experience—something a clinic visit alone can’t always capture.
We are currently piloting this technology with a select group of families during regular KOALA visits. Our goal is to expand this offering to KOALA participants during the upcoming KAND Conference, giving every family the opportunity to contribute valuable at-home data to our growing research efforts.
Why It Matters
These additional data points give researchers a more robust, dynamic view of how KAND affects individuals in real life—outside the clinic. This is especially important for rare diseases, where every data point counts. By building a richer dataset, we not only improve our understanding of the progression and variability of KAND, but also make significant strides toward being clinical trial ready when a treatment becomes available.
Thanks to our collaboration with BioSensics and the dedication of the KAND community, we’re unlocking new possibilities in rare disease research—and bringing hope one step closer. Stay tuned for more updates as we continue to scale this effort and push the boundaries of what’s possible in KIF1A science.
What does BioSensics have to say about our partnership? Take a look at quote from their partnership announcement below:
The project represents a transformative step in expanding our understanding of KAND by incorporating continuous, real-world data collection into an already robust clinical research program. This will allow deeper insights into the lived experiences of KAND patients, support the development of digital outcome measures, and ultimately accelerate progress toward effective treatments.
We are honored to partner with such passionate and visionary leaders in the rare disease community. Together, we are taking a major step forward in bringing cutting-edge, patient-centered technology to the forefront of KAND research.
About BioSensics
BioSensics is the leader in developing wearable sensors and digital health technologies for clinical trials, remote patient monitoring, and health assessments. Founded in 2007 by three scientists from Harvard, BioSensics has created new paradigms in using wearable sensors in healthcare and revolutionized the medical alert industry by creating technologies that are now being used by thousands of older adults. BioSensics develops and provides end-to-end solutions and services for the collection of digital measures and biomarkers in clinical trials and research. BioSensics solutions and products have been deployed in more than 100 trials in 20 countries, including for collection of primary or secondary endpoints in more than 25 trials. BioSensics has received over $50M in research and development program support from the U.S. National Institute of Health (NIH). In 2022, NIH selected BioSensics to develop remote measure technologies for clinical trials in rare diseases.