Digital Health Technologies for Charcot-Marie-Tooth (CMT) Disease
Patients attending the Clinical Trial Readiness Summit will be eligible to participate in this two-week study. All participants will join the clinical researchers and HNF staff for a private dinner on Friday night and will receive a $50 Amazon gift card upon completion of the study.
Wearable-based Remote Monitoring Upper and Lower Limb Function in CMT Pilot Study launches at CMT Clinical Trial Readiness Summit, June 7th & 8th.
The Hereditary Neuropathy Foundation, (HNF) is advancing digital health technologies and biomarkers for Charcot-Marie-Tooth (CMT) disease using FDA-registered wearable devices in a new partnership with BioSensics™.
CMT is a genetically heterogeneous motor and sensory neuropathy characterized by progressive sensory loss and weakness of the legs and arms causing gait difficulties, frequent falls, balance impairment, and hand weakness. Currently, barriers to clinical trial success still exist including travel, cost restrictions, sensitive outcome measures, and retention. HNF aims to close these gaps and derisk upcoming clinical trials for CMT with emerging wearable technologies.
As a starting point, BioSensics and HNF will launch a pilot research digital wearable study to establish the initial clinical validity of BioSensics wearable devices, PAMSys and LEGSys, in CMT. Comparable to the size and weight of a smartwatch, these devices can be easily worn on the wrist, ankles, or as a neck pendant. Participants will receive their devices with on-site training at the first CMT Clinical Trial Readiness Summit on June 7-8 in San Diego, CA.
“HNF has a strong history of being productive and impactful with the CMT stakeholder community utilizing the Global Registry for Inherited Neuropathies (GRIN) patient registry, our training & research in patient engagement, and lessons learned from failed clinical trials for over a decade. This study is an exciting extension of this work,” said Allison Moore, Founder/CEO of HNF.
“We are honored to work with HNF on this exciting project that promises to change the future of clinical trials for CMT and other neuromuscular diseases”, said Ashkan Vaziri, Ph.D., Founder/CEO of BioSensics.
About BioSensics:
BioSensics is the leader in developing wearable sensors and digital health technologies for clinical trials and research, 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 used by thousands of older adults. BioSensics is the only company that offers comprehensive end-to-end solutions and services for the acquisition of digital measures and biomarkers in clinical trials and research. BioSensics designs and validates all elements of their solutions, including wearable sensors, software, and algorithms. Our experienced research team extends complete scientific and technical consultation services, such as study design and protocol development, in addition to statistical analysis. Furthermore, the BioSensics clinical operations team provides comprehensive operational and logistics support for clinical trial projects. BioSensics has received over $50M in research and development program support from the U.S. National Institute of Health (NIH). In 2022, BioSensics was chosen by NIH to create remote measurement technologies for use in clinical trials involving people with rare diseases.
Are there any places in Tennessee that does these studies
I was diagnosed in 2000 at age 40, now years later I hurt in both arms and legs, I have lost most use of my left arm, leg weakness, back continually hurts, memories are disappearing.
My daughter has inherited this from me after I inherited from my mother who had inherited it from her father. I am willing to do anything that might could help anyone in the future.