NEW YORK, NY, UNITED STATES, May 16, 2024 /EINPresswire.com/ — 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™.
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.
About Hereditary Neuropathy Foundation:
HNF’s mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support people living with CMT and their families with critical information to improve quality of life, and fund research that will lead to treatments and cures. HNF’s Therapeutic Research in Accelerated Discovery (TRIAD) is a collaborative effort with academia, government, and industry to develop treatments for CMT. As part of TRIAD’s research consortium, the Global Registry for Inherited Neuropathies (GRIN) was established as a patient registry to collect and analyze patient-reported data and clinical scales, including the ONLS, CMT-FOM, CMTPedS, and CMTInfS and the collection and curation of genetic reports. The data has been instrumental in identifying the burden, diagnostic journey, and prevalence of CMT. In 2022, HNF launched the CMT Genie, a patient-initiated genetic testing program to support genetic diagnosis by offering patients virtual genetic counseling with an option to obtain a prescription to seek a genetic diagnosis.
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.
Allison T. Moore
Hereditary Neuropathy Foundation
+1 212-860-5405
email us here
Visit us on social media:
Facebook
Twitter
LinkedIn
Instagram
YouTube
